Recently I discovered a new organization; a new website—Birdability. The organization is focused on disability inclusion in birding. It may seem like a quirky corner of concern, but it was a reminder of our inability to segregate the impact of disability, or any characteristic of diversity, to only one or two specific areas of life. Most of my characteristics are visible: I’m white, female and dwarf. I’m a birder. You can’t always tell that by looking. I learned the voices of birds as a child. My Pa Tom pointed out the distinct calls of our birds and I studied the variety available in the dusty fields around our little farm. Accessibility wasn’t a problem because I just walked around and listened.
I don’t suppose I thought of myself as a birder until I was forty-ish. I have noticed birds all my life. Hawks sat on the overhead lines along my routes to and from Joplin beginning in college. Driving cross-country in the summer, the red-winged black birds perched on fences just beyond the reach of the highway. Touring a civil war battlefield, I found blue birds. I was struck by the curious cheerfulness pausing on a branch, more than a century after bloodshed continued to shape our national landscape. Being a homeowner, however, brought bird feeders into my life. I lured a variety of nuthatches, chickadees and juncos into community with the sparrows and blue jays and cardinals. I bought finch seed and found gold finches in my yard. By May, the humming bird feeders were up. I found the Cornell bird site with audio and struck up a conversation with cat birds hidden in the twilight shadows along the back fence. Birding is a simple enough way to connect with nature, and it expands my awareness of the beauty lurking in bushes and branches all around us. I’ve found birding spots in parks, shoreline marshland and wherever I go, outside my door.
I don’t need to focus much on my disability when birding is a solitary activity of my own design. But if I venture out, I have to plan. Is the trail area accessible? Is there a driving route that could make exploring more manageable? Is there parking or are there places to rest along the trail. I am reminded of the ugly racial encounter in New York City’s Central Park when a white woman called the police on a Black man birding. Race and ethnicity don’t matter to the birds. I used to think there was a bias against younger women birding but it appears I’ve outgrown the “younger” tag.
Radical Wholeness stands for our wholeness wherever we are and whatever we are doing. Whenever we find activities people are excluded from, we must become aware of the barriers we create or allow to remain which distance segments of the community from participating. We are called to be inclusive in even the most quirky or mundane of the activities of life. Kudos to Birdability for filling a need and making one more corner of life more accessible.
“You’re the best!” We all need to hear that. We all want to excel, to be valued and to be acknowledged. I suspect most of us hear it much less than might be healthy for us.
Often, we have a hard time really hearing the accolade, even when it’s spoken to us. The little doubt engine in our mind keeps chugging along with “I wonder if they really mean it,” or “That’s a pity comment. They just feel sorry for me.” Many people, including those with disabilities, can be quite creative in getting jobs done but then worry about whether the work is “as good as” others’ work. It seems the harder it is to do, the more we worry about quality.
I just want to remind us all (I’m talking to you there in the mirror) that you are the very BEST at being you! You are, in fact, the only one of you the world has. There really is no external standard for being the best you. The media, social media and our society in general, holds out nearly impossible standards for being the best parent, best spouse, best ________ professional. We are endlessly comparing ourselves to others and finding ourselves—well lacking something or other.
What does the best you look like? Looking within rather than outside ourselves can reveal where our greatest work lies. And it is where our greatest success lies. The divine imprint within you is not based on someone else—it is uniquely you and at the same time, universally divine. Only you have the power to bring into manifestation the best you. Only you know the direction you desire to go; the gifts you desire to share; the change you would like to see.
Think of three things you’ve done that at one time, you didn’t think you could. Think of the seasons you’ve weathered, the joys you’ve celebrated, the love you’ve known. Just for a moment savor being YOU! Because you’re the best!
Audacity is such an endearing word to me. Merriam Webster online says it is “a bold and daring quality that is sometimes [perceived as] rude or shocking”. Yes, I have been called audacious and it is a badge of honor!
One of Unity’s fundamental principles is the idea that there is that of the Divine within each one of us. A spark of divinity; the spiritual I AM of us; the Christ of our being. It is our essence, our blueprint, that which makes us each a part of the whole. It is the destiny of being made in the image and likeness of the Divine referred to in Genesis 1:26. It is that which makes us heirs to the divine kingdom.
Sometimes the message of the power of our inner divinity gets linked to a message of how our inner divinity should manifest in the physical world of our bodies. Unfortunately, for some, when the picture of how our inner divinity should look in physical bodies doesn’t match the picture of how our bodies actually look and feel, we lose sight of the original, powerful message of our inner divinity. But WHAT IF, there is no single picture of what a vibrant and healthy divine essence looks like in physical manifestation? What if the album of vibrant and healthy divine essence includes your picture? Radical Wholeness begins with that audacious foundation, but it doesn’t stop there!
Radical Wholeness has its inception in questioning the teachings and messages interpreting that fundamental principle of our inner divinity and Radical Wholeness encourages us to continue to question. As we begin to craft a more inclusive theology, are there ways to unmask the deeply embedded “ableism” inherent in how we describe the power of our divinity? Talila Lewis offers this definition of ableism in her January 2022 update of a working definition: “A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness”, and/or their ability to satisfactorily re/produce, “excel” and “behave.” You do not have to be disabled to experience ableism.” [working definition by @TalilaLewis, updated January 2022, developed in community with disabled Black/negatively racialized folk, especially @NotThreeFifths. Read more: bit.ly/ableism2022]
Questioning is a demonstration of the very power we are taping into. Questioning can arise from our divine wisdom and understanding. It can arise from our unconditional love for self and others. To be the agents of change the world is yearning for, we must question the ways we exclude others. If you want to be a part of a community but are unable to, ask why there is no way for you to access the building, the lessons or the social interactions of spiritual community. If the metaphysics of a lesson focus on a healing outcome marked by ableism, ask the minister how that might also be interpreted differently. Community by community we can build a more inclusive network of support by having the audacity to question exclusion.
What are the dreams of the disabled? Far too often we (the disabled) are told to tamper our dreams, to “be realistic”, and not to claim ALL of the kingdom we are heir to! Radical Wholeness encourages each one (whether you perceive yourself to be abled or disabled) to claim all that you might desire through the power of the inner divinity in you! What does a sense of well being look like to you? Not compared to anyone else or to a standard held up as the model for everyone to aspire to. If prosperity is a sense of wellbeing, how might that appear in your body and your life? What do you have to share? Affirm there is a channel for that expression in the world right now! Want more love—be more love! Principles work and there are no limits on how principle works based on what the world perceives as physical/intellectual limitations. Disabled people heal, we manifest dreams, we love, we create, we live beautiful lives. Be audacious enough to ask the Universe for what you desire and believe it is yours. Do not settle for the lesser dreams others may say you are entitled to. Be bold, be unreasonable, be daring, be more than others believe you to be, be all you were created to be. Be the audacious expression of Radical Wholeness you are!
Disabled people have long been heirs to charity. Receiving only what others give “out of the goodness of their heart”, we are not treated as entitled to the fullness of a share of anything. Subtly or overtly, faith traditions have taught the role of the disabled is to provide an opportunity for the abled to learn the lessons of generosity and charity. The disabled are a tool for the spiritual maturity of the abled and the spiritual path of the disabled is one of suffering, acceptance and humility. Not transforming yourself into the abled image, or healing, is a spiritual failure. The emotional freight in the phrase “those less fortunate” is enough to stop a train. It is the language we use to teach children to share and the language we use to leverage our positions of entitlement over people who often have lacked the same opportunities and resources for generations. It is the belief we somehow need to make someone else less to make ourselves more. If you believe in an inclusive theology, it is challenging to understand the practices and language most people with disabilities encounter in church.
I include this information on the education of disabled children to give you a social context, with dates, which reflects the general attitudes towards people with disabilities. Did you know we put a man on the moon (July 20, 1969) before we guaranteed that children with a disability were entitled to an education if the program received federal funds (Rehabilitation Act, section 504, 1973)? Prior to this legislation, it was sufficient for a district to say they didn’t have the resources or program for the child’s needs and parents and children had no recourse. “In 1970, U.S. schools educated only one in five children with disabilities, and many states had laws excluding certain students, including children who were deaf, blind, emotionally disturbed, or had an intellectual disability.” (https://sites.ed.gov/idea/IDEA-History) Think about how recent 1970 was in history. Only one in five children educated! State schools provided segregated education for a few, often for the blind and deaf. The education of children provides a social framework for how people with disabilities have been viewed. “Congress enacted the Education for All Handicapped Children Act (Public Law 94-142), also known as the EHA, in 1975 to support states and localities in protecting the rights of, meeting the individual needs of, and improving the results for infants, toddlers, children, and youth with disabilities and their families. This landmark law’s name changed to the Individuals with Disabilities Education Act, or IDEA, in a 1990 reauthorization.” (ibid) IDEA added the concept of “least restrictive environment” and opened up the concept of “mainstreaming” disabled children in the classroom with their non-disabled peers. For more information on the struggles in 1977 to update the Rehabilitation Act in support of the Independent Living Movement, watch the documentary Crip Camp on Netflix.
Press pause: I was not denied an education. I graduated from high school in 1973 because of two essential abilities: 1) I did not need educational support for learning and 2) I was mobile enough to navigate stairs and hallways unassisted. Judy Heumann, however, writes in her memoir Being Heumann, about her fight to attend school in a wheelchair.
Back to disability and church. This July we acknowledge 32 years since the signing of the ADA (Americans with Disability Act). While not perfect, 32 years ago it offered a foundation to challenge lack of access and began to establish some guidelines for what accessibility meant. It opened doors for making accommodations in support of the employment of people with disabilities. And do you understand that churches are exempt from the ADA? This was not an accident. Organizations and alliances of churches FOUGHT to be permitted to continue to exclude people with disabilities. Of course, that’s not what they said. They said it was about the separation of church and state (which seems to be a blurry line, especially for Christians). It was also about money. Churches are old buildings, often historic, and it would be too costly to make them accessible. If you question why church attendance (and not just Christian church) and support is declining, look at the flocks of people churches are excluding. LGBTQ marriage and just being who they are; women in leadership; the role of social justice and racial equality in spiritual life—these are hot buttons with organized religions taking positions that are driving people out of church. The disabled just can’t get in.
I would propose that we must examine the theology we espouse in relation to people with disabilities. Radical Wholeness stands for an inclusive theology which celebrates not only the divine within each one but the unique and diverse vessels of humanity carrying the divine in the world. If we can formulate a more inclusive theology and articulate it in meaningful ways, it may lead us to a more inclusive attitude about accessing spiritual community. Take a moment to reflect on your theology about disability. Is Radical Wholeness meaningful to you? Are there ways you exclude or devalue people with disabilities or if disabled, have you been excluded or devalued in spiritual community? Take a moment to reflect on spiritual community. Does your church or gathering offer accessibility and do you see a diverse community that includes people with various disabilities? If July does not find you celebrating the ways your spiritual community is inclusive of people with disabilities, then I hope July finds you seeking ways to advocate for change in your spiritual community. I hope you find a sense of radical wholeness for yourself.
This year Independence Day finds me, like many others, with a lot of mixed feelings about freedom and the actions of our country. The focus on our founding and the inception of our nation, brings up white supremacy, patriarchy and a multitude of inhumane policies and actions. There are not enough fireworks and potato salad to blur the vivid portrait of all the aspects of our founding that were the complete antithesis of the democracy and freedom portrayed in the documents of our beginning. “All people” did not include all people and the path to inclusion is bitter and long and painful and not complete.
So, I choose to look at the freedom of Radical Wholeness. Made in the image and likeness of that universal energy we refer to as God, each of us bears the divine imprint of our creator. That which is within is our essence and is equally whole within each one. The radical element of Radical Wholeness is that every single incarnational vehicle, every body, is equally valuable and an expression of the divine within. Every shape, size, skin color, gender identity, sexuality, and ability is just as perfectly human as every other one. Equally divine and uniquely human, no one comes into the world to be fixed or healed. No one’s body is a manifestation of a spiritual failure. God is not a person but if it was, there would be no picture on God’s wall of what the favorite, whole and complete, offspring looks like. Instead, we would all be on God’s wall; each one of us the beloved, favorite child.
If there is no singular image nor standard, we are all intent on shaping ourselves into, then each of us is free to be “the best me!” We are free from comparison. I don’t need to aspire to the looks or success measures or values or performance of anyone else because I am not that person. I am free from the anger or shame which arises when I perceive I am lacking because there is no lack in my unique wholeness. I can release any perception of lack as false and let the anger or shame go with it. This can actually be a challenge, because we often internalize some of the judgmental standards of the systems that oppress us. For me, it is letting go of the Ableist ideals that I have to be productive, exhibit physical stamina and constantly on the go to have worth. I take the challenge to claim my freedom to be who I am in this moment.
There is always this tension between accepting myself as I am and challenging myself to be the best me I can be. I have to examine if the best me I am aiming for is being shaped by ableist ideals (or it may be other standards for you) or simply my guidance on ways to be more authentically the expression of Spirit I came here to be. No one can take away my freedom to be me but I can imprison myself in false beliefs and comparisons. This Independence Day I claim the freedom of Radical Wholeness and celebrate me. I invite you to celebrate the freedom to be you as we work together, until everyone feels celebrated and free.
Image description: The sparkle of a single sparkler against a black background
“You are whole!” This is the core of Radical Wholeness. I was blessed to receive this message at a very, very early age. It didn’t come from the church, and I’m not sure how it was worded, but it was an insight from my father, against all appearances. Appearances described me as deformed, dwarf, defective. That is not what he saw nor what he believed about the essence of me.
My wholeness is not a gift, unique to me, but rather an expression of the universal wholeness present in each of us. My father’s ability to see my wholeness, and treat me as whole, nurtured my ability to live from my wholeness in a world that would often see me as broken.
The medical community and most religious communities see me in need of healing, my appearance a signal of a fracture in the intended perfection of humanity. Radical Wholeness does not stand for a singular image of humanity perfected but a diverse kaleidoscope of images, each containing the divine wholeness which is our birthright. If we, humans, are created in the image and likeness of the creator, how is it possible that some or any of us are created broken or less than whole?
I am aware of theories in my own faith tradition that hedge around Radical Wholeness and begrudgingly acknowledge each of us is whole—somewhere within—but these theories maintain that appearances indicate we have been unable to connect with that wholeness. Your difference is an indicator of your broken connection. This theory depends on a singular image of humanity perfected and any deviation is the basis for the diagnosis of your brokenness. If there is no secret singular image—if no one person holds the picture of how spiritual wholeness manifests—then we are all whole and able to connect to our innate wholeness, even if we are not consciously aware of our connection.
It is the universal nature of our wholeness which allows me to declare with you, “You Are Whole!” without ever meeting you. Without knowing what you look like or what you’ve done or the direction your life’s path has taken, I know you are whole. Our wholeness is not something that can be taken, diminished or separated from us. It can only be ignored. Ironically, our free will allows us to believe the false messages of brokenness. It is our belief in separation, not any actual separation from our wholeness, that gets in the way of exercising our spiritual power. Radical Wholeness stands for healing as an exercise of our power, not as a requisite for powerful demonstrations. It stands for restoring vitality, opening to abundance, stepping into new opportunities and initiating change in our world no matter how our appearances may be judged by others. All of this is possible because we each have the power to tap into the WHOLENESS we already are. There is nothing to fix before we can begin. Live from your wholeness now, right where you are, just as you are.
Early on, everyone with a disability must resolve how to answer this perennial question. Whether your disability is easily visible and the question is almost a greeting or whether the question doesn’t arise until your disability is revealed, the question comes. Sometimes there is a follow-up: Why can’t you…. If you’ve grown up with a disability, you’ve mastered some sort of answer by the time you are an adult. If you’ve acquired a disability, the sad news is that in the midst of grieving whatever function you have lost, you also have to come to terms with answering this question.
As a child, I learned quickly that I was expected to answer this question by explaining my dwarfism was a lack of bone growth. As I got older, I added that God makes everyone different; different sizes, shapes and colors. Coaching children to answer puts two burdens on a child. First, by answering with information you do not challenge the “wrong” part of the question. You answer what is wrong with you. Repeatedly the child hears and absorbs “there is something wrong with me”. Second, the expectation the child will answer with information imprints on the child that they are expected to share personal information with total strangers. By virtue of their difference, they are not entitled to the same sense of privacy and personal space everyone else gets. Honestly, I coached my children in the same kind of answers I always gave. Today, I would teach them differently.
Nothing is wrong with me. Different is not wrong nor is it bad nor less than. If responding to a child, I would add “And your parents should explain that to you.” The task of teaching children about differences is not the duty of all the people around the child who are different than the child. Especially if it is a child-to-child interaction, no child should have to defend their right to exist to a peer. The idea that this applies equally to adult-to-adult interactions should not have to be explained but here it is. I don’t owe you an explanation or information. I will not leave the idea something is wrong with me unchallenged!
I often go to the story in John 9 as a metaphorical guide to Jesus’ response to disability. The story begins with the disciples questioning: Who sinned, the parents or the man, that caused him to be blind? Definitely a judgement that something is wrong. Jesus responds, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.” So nothing is wrong. Let’s think about the last portion of the response—so that God’s works might be revealed in him. So why are any of us here? So that God’s works might be revealed in us. Same deal for all of us. People with disabilities do not have some special directive nor are they excluded from purpose and value. Then the story is odd. Jesus puts mud on the man’s eyes and tells him to wash it off. For me, the mud represents all the judgments, limiting opinions, and disrespect heaped upon all of those judged different but especially those with disabilities. Then Jesus tells the man to wash it off. It is an action the man himself takes, inspired and guided by Spirit. “Then he went and washed and came back able to see.” Here is where I feel strongly about metaphorical meaning, not literal meaning. What did he see? The literal and even common metaphorical meaning is that his sensory eyesight was activated. It was a physical healing. Yet the passage says he was a beggar and no one could recognize him now. He was a changed man. Here is what I think he saw—he saw himself as a divine being, worthy and capable. He stood straighter, walked with confidence the familiar paths, he changed his appearance with a sense of self-esteem. The transformation of consciousness is a powerful healing that is possible for all of us. How many of us need restoration of our ability to see ourselves as worthy; as divine heirs of the kingdom? How many of us never notice the mud placed upon our vision, layer after layer, day after day? How many of us are willing to take action when divinely inspired? Or do we wait for someone/something else to act upon us for healing?
During Lent we are encouraged to give up something. Our Unity Lenten booklet lays out a plan to let go of the negative and take up the positive. Let’s give up the mud! Let go of mud we heap upon one another and the mud that we accept when heaped upon us. There is nothing wrong with you; there is nothing wrong with others. If anyone asks what is wrong with you, do not affirm the idea by explaining what is wrong. Challenge the idea! Deny it has power over you! There is nothing wrong with me. We may be different but that does not make one of us wrong! You do not owe anyone a further explanation. Let us take action to wash the mud away, thought by thought, and see ourselves for the brilliant expressions of Spirit each of us is. We are here so that the works of God may be revealed in us. The Divine shines in every single, radically whole, one of us. Shine on!
Of all the lessons I have encountered during the pandemic, perhaps none is as striking as the value of inter-dependence. The emperor of independence has been exposed as vulnerably naked and myths that seemed to under gird the value of independence have proven false. I can see clearly that we are different people when we are isolated from one another and we are all connected in ways we might not have observed nor valued in the past.
Early on it became apparent that one by one, the virus spread from contact to contact. Our health depended on the identification ability, isolation protocols and forthright sharing of information, not only by those in our area, but individuals and leaders around the world. The web of connection had tethers on every airplane and cruise ship and bus and subway in the world. Not only is “no man an island”, even physical islands are connected to the whole of the planet.
Much of our western philosophy of “rugged individualism” and “fierce independence” is based on “ableism” or the valuing of physical, intellectual and emotional abilities and the superiority of people with these attributes expressing without limitations. We have devalued the concept of inter-dependence and denied the reality that even the most “able” of us depend upon one another. One of the great fears of aging is a decline in abilities that forces us to rely upon others. We resent the change because we have long devalued interdependence.
The pandemic leveled the field in a way we would not enter voluntarily, as disabled and abled alike found themselves working from home, getting shopping and food delivered, and restricted in our mobility. Everyone was reminded how much we depend on the “essential workers” whose work is to care for us when we’re sick, drive trucks to move groceries and goods around the country, provide utilities, stock the store shelves and make sure we have food to eat. People whose work is cleaning suddenly were valuable. We have had to ask for help or at least acknowledge the help we receive from others. We have shared resources in shortages. We have stretched ourselves to find ways to connect with one another, waving from balconies, putting up signs to be viewed through windows and taking video technology to new personal levels. In its absence, we have been reminded of the joy of community.
I sincerely hope that interdependence and the joy of community are values we can carry forward, beyond the pandemic. I am not naïve and acknowledge the ways ableism flourished in the pandemic and sought to further marginalize those with underlying medical issues and those in poverty. While the gaps widen between those who have financial and economic power and those who do not, I hope we can all remember the webs of connection revealed during the pandemic. When we accept every single link of consumer and producer connects us to each other, no one is superior to or left out of the wholeness of our precious blue marble, spinning in space. As it becomes safe to return to gatherings and hugs, may we celebrate the joy of community shared in smiles coming out from behind masks to be shared with those in stores and restaurants. May we express our gratitude to those who work in the farmlands and on the docks, as well as those who tend us in hospitals and residences. May we greet one another from a sense of dignity and respect no matter what language we speak, clothes we wear, where we live, and education level we acquire. May our value be inherent in our beingness, without measure of productivity or abilities.
Someone asked me why interdependence is not talked about more in the disability community. My response was related to my perception that typically “ableism” minimizes the contributions people with disabilities make. Inter-dependence assumes that everyone in the community contributes something; there is value in receiving as well as giving and there is an ebb and flow that benefits everyone. Ableism looks at a request for help or a need for assistance as a weakness and a failing and does not value nor acknowledge interdependence. Ableism values “power over” others above “power with” others. Ableism also ignores the fact that the entire consumerism of power depends on the work and contributions of others.
Radical Wholeness stands for the idea that “physically able” is not the same as “spiritually connected”. The most able among us may see themselves as separate from the enlivening divinity in each of us. I am not criticizing them yet my spirituality calls me to see myself in the perpetual dance of humanity and divinity. To feel separate from the divine impacts many areas of our lives and to feel connected is not a guarantee that our humanity appears like the humanity of others.
One of the last demonstrations outlined in the gospels was Jesus washing the feet of the disciples. Afterward, Jesus didn’t say, “I did this so that you know who is in charge!” or “I did this for you and now you owe me!” Rather he said, “So if I, your Lord and Teacher, have washed your feet, you also ought to wash one another’s feet. For I have set you an example, that you also should do as I have done to you. Very truly, I tell you, servants are not greater than their master, nor are messengers greater than the one who sent them.” John 13:14-16 NRSV. I read this as an admonition for interdependence. It is an invitation to continually acknowledge our oneness in Spirit; the inherent wholeness in each of us; and the joy in a community caring for one another.
Post script: as I prepare to post this, I ache for the people of Ukraine seeking to live in peace and I ache for the people of Russia longing for the same peace. We are connected without regard for distance and I pray for a peace whose outworking is not apparent in this moment but possible through Spirit nonetheless.
With roles in Station Agent and Game of Thrones, Peter Dinklage has worked hard to establish himself as a serious actor. Recently, he has used his voice and public platform to call out Disney productions for half-stepping diversity progress. Apparently, the new Disney production of the age old “Snow White and the 7 Dwarfs” will take the white out of Snow White but leaves the 7 Dwarfs, and its accompanying damage, intact. Maybe because Dinklage uses the F-bomb liberally in his comments, maybe because no one wants to hear or understand what he’s talking about, Dinklage is being dismissed as simply, “an angry little man”. What is all this about?
Fairy tales, for the most part, involve mythical things or powers that don’t really exist. While extinct dinosaurs might resemble the imaginary dragons, you cannot find the elusive flitting fairies, gargoyles that leave their stony perch, vampires or giants bigger than trees. The challenge with short-statured people in fairy tales (dwarfs, leprechauns, trolls and gnomes), is that short people do exist. They are real human beings just like everyone else. They are never portrayed in tales as heroic beings like everyone else.
Many Unity ministers love to use The Wizard of Oz to examine metaphors and lift it up as a spiritual tale. I do not. What do you do about the Munchkins? One of the primary tools of discrimination of people with disabilities is “infantasizing” them, or making them childlike. If you go to Munchkin.com you find a company making baby products. This village in Oz is filled with one dimensional (height) people with cute little costumes and no real identity or characteristics. One day I found myself in the grocery store, going up and down the aisles to gather my groceries. A man sidled up to me and with a sneer said, “Look what we have here! A Munchkin!” I was very uncomfortable and moved away from him. He located me in another aisle, “Are you gonna tell me where the wizard is?” The evil in his tone and demeanor was starting to freak me out. I abstained from saying, “May a thousand flying monkeys come out your ass,” because I was a pastor and that was not a very pastoral thing to say. Instead, I found my daughter and hurried out of the store. I should have told the store manager. The problem with portraying people with dwarfism in fairy tales is that a fair number of people cannot distinguish fairy tales from reality. Dinklage, like most of us, did not grow up with people looking at us as potential romantic partners, as leaders of industry, as inventors, as creatives or people to respect. We were “the dwarf” in class, in town, in our work environments, often in our own families. It is a minimization that few are interested in undoing. Dinklage hoped he had the recognition to make a change. Sadly, I think he was wrong.
Disney is in the business of fairy tales. In recent years, they have begun to identify some of the damage done in the typical fairy tale. For generations we have taught young women that they need a man (ideally a prince) to rescue them from danger (not that the men cause the danger, that is left to evil older women) and finding the right prince is the only real path to happily ever after. Young men are taught fighting is the answer to any conflict, physical strength is the primary characteristic of success, and you also need to find a princess for happiness. Newer stories are being told about women who fight (Mulaun, Maya and the Dragon), women who don’t get rescued (Tangled and Frozen), men can lack physical strength, be sensitive and prevail in peace (How to Train Your Dragon-not a Disney film, DreamWorks) and the absence of beauty as necessary (Shrek, also DreamWorks). Still, we leave the dwarfs intact as not real people, even though we have real people in the roles. Snow White in the forest with 7 little men is not in any danger because they aren’t real men, they are dwarfs. They have no capacity for violence, sexuality nor heroism. Only one out of 7 seems to be very smart (Doc vs Sleepy, Happy, Grumpy, Bashful, Sneezy, Dopey). Maintaining this one-dimensional portrayal of people with dwarfism is what Dinklage is calling out as the perpetuation of the damage done in fairy tales, while appearing to correct the bigotry of Snow White-ness.
Dinklage’s comments are being countered with wails of “So should we do away with all fairy tales?” “Why does everything have to be politically correct?” “Why can’t kids have stories anymore?” So here is a thought. Before we cast out damaging fairy tales, we need to first, acknowledge the nature and existence of the damage fairy tales have done; and second, we need to write new stories that counter the damage. What if it was The Princess and 7 Men in the Woods? What if the men, maybe a mix of short and tall, had real strengths and weaknesses, and a devotion to protecting and caring for the princess? What if they performed heroic acts to keep her safe? What if it was a dwarf man who summoned the courage to kiss the poisoned girl they all had cared for and the princess awakens to a love born out of caring and courage—which might actually be the foundation for a happy marriage? I would suggest that we cast the princess as a woman of color and short stature but then observers could dismiss it as just a “dwarf tale” not really relevant to “real people” or in our value system, tall people. Just as even winning an Emmy has not been enough to eliminate references to Dinklage as a “dwarf actor” not merely a talented actor. Putting that “dwarf” label in front of anything is like adding a demerit, or a negative sign.
People with dwarfism are real people. They are in pulpits and classrooms and boardrooms and hospitals. They have hopes and dreams; they have marriage and divorce and children. Like all real people, they have diseases and pain and yet, like all people, the measure of their worth is not their height nor their productivity. We all have sacred value. Minimizing the value of anyone, based on any characteristic in this material and temporary manifestation in the world, is injustice. We need to stop telling stories that perpetuate injustice. We need to create new stories to lift up the characteristics that lead to true success—kindness, compassion, courage, wisdom. We need to start NOW.
A couple years ago I found this idea in an article and I’ve adopted this practice ever since. Last Sunday was the end of the first full week of the new year. Having experienced the uncertainty and unpredictability of the last two years, I am confident things will continue to surprise and sometimes disappoint me in the coming year. That has not dissuaded me from setting intentions and maybe even a few goals. Yet that is not what the practice is about.
At the end of the week, or Sundays for me, I stop to reflect on the blessings of the week. 2020 was packed with the drama of retiring in a pandemic and moving across the country. Last year, I have to say, sometimes I considered an uneventful week a blessing.
A day is lived moment by moment. A week is built by seven mostly ordinary days. And a year is filled in by 52 weeks. It’s fine to have a New Year’s ritual of looking back at the year but my memory vision is not what it used to be. I have found a weekly recording of blessings both keeps me present to the gifts of my ordinary life and gives me a scrapbook of memories for my New Year’s Eve reflection. I enjoy the challenge of looking for gifts as the isolation of our pandemic continues to disrupt the adventures we used to look forward to. Nature offers her gifts in the silence and isolation that always exists and I return to her often. Sundays I take time to take a page from a calendar or a small note sheet and fill in my blessings. I tuck the note into the Blessing Jar and release it. New Year’s Eve is a pleasant surprise as I (and family if they are here) pull the notes, one by one, out to review the year. There are always more blessings than we remembered.
If you have no Blessing jar, any container will do. If you don’t have a page-a-day calendar, recycle any piece of paper. The important thing is to take time to sit in gratitude and savor the blessings of the now moment. If you think you have nothing to be grateful for, consider the mishaps that didn’t happen. I had one of those driving days yesterday. I sighed as I pulled into my parking space, grateful none of the accidents I narrowly avoided happened. Grateful for my reflexes and a reliable car. And a parking space by my door. It’s not too late to begin a Blessing Jar for 2022. Find the gifts you might have overlooked and allow gratitude to guide you through this year.
As we turn the calendar page, we focus on new beginnings. As we practice writing a new year, we imagine the new skills we will gain. We write goals as if there is a magic in the new year that will propel us past all the things that got in the way of reaching previous goals. We affirm that this year the elusive something will be added and we will find fulfillment. We affirm that this year, the persistent appearance of those things we do not desire will lessen and we will find fulfillment. As I pondered what the elusive something might be and what the persistent annoyances are, I discovered that everything challenges us.
Joy calls us to lean fully into the experience without the reservation of fear that joy is limited and irreplaceable. We are tentative in joy, exhausting its fleeting time, and then lamenting its absence. Joy calls us to dig deeper to discover the joy that comes from within and is not dependent on the temporary nature of the outer world. Joy calls us to embrace the life we have.
Sorrow, which we would rather avoid or dismiss, calls us to resist narrowing our focus to only that which we have lost. Sorrow beckons us to reflect on all that we have enjoyed, find gratitude in this moment for all that remains and expand our awareness into the fertile fields abundantly seeded with possibilities yet to be revealed.
Love calls us to recognize it as our true nature, the essence of our being rather than something added to us from outside. Love illuminates our wholeness and our integration into the wholeness the universe embodies. Love dissolves the barriers and allows us to see we are not broken, waiting for some missing piece to bring us completion. Love declares we are wholeness, not as a couple or a tribe but as an element of the All- ness we name God or Allah or the Divine.
Hate, the human distortion of our divine nature, calls us to examine what fuels our belief in separation. Whether we point to politics or religion or nationalism or simply fear of otherness, hatred is a creation of our humanity. As we sift through all the elements of our hatred, we may ultimately uncover the evidence of our divine unity deep within our human experience.
Justice, that virtuous right outcome we seek, calls us to discern the lens of our rightness. What shapes our perception of what is right and what is wrong in any situation? Justice calls us to dismantle the constructs of our tree of knowledge, the duality of right and wrong, and imagine what will be most beneficial to each one. Justice invites us to see it as a correction only necessary in our human floundering out of alignment with our best self and calls us to endeavor to live more fully centered in our best self.
Injustice calls us to act in ways that support the dignity, the worthiness and the divine essence of each one. Injustice is evidence we, as a community, have allowed our humanity to stray from its divine foundation and we are called, not only to find our way back to our divinity, but to act as examples for those still lost and wandering. Injustice is a temporary condition in the material world and we are called not to see it as diminishing the value of individuals nor as a permanent condition beyond our control to redirect.
However the events of 2022 challenge us, may we respond in ways that bless our lives and the lives of others. May each challenge strengthen our faith and renew our resolve to not tire of doing good. May we find wonder in the ordinary and splendor in the silence. Let us create a 2022 which honors the ancestors, gives us joy in the present moment, and expands our vision for what comes next.
Joy should be simple—it’s my name. It is a word tossed around quite a bit at Christmas. The angels appearing to the shepherds sought to calm them by saying, “Do not be afraid; for see—I am bringing you good news of great joy for all the people”. For many of us, joy is what we seek in the outer world. We find it in the birth of the baby or the news someone brings to us. I believe joy, like all the advent gifts, resides within us. Yet, as one of my favorite theologians, Henri Nouwen, says, “Joy does not simply happen to us. We have to choose joy and keep choosing it every day.”
Choice is another one of those spiritual gifts. We can choose where we place our faith. We can choose peace or struggle. We can choose love or anger. We can choose joy or all the things that feel like the absence of joy. In loss we may feel like all that gave us joy is gone. Yet just as love comes from within us, and we pour it out upon ourselves and others, joy wells up from within us when we allow it to and acknowledge it. In times of great loss, acknowledging joy may feel like a betrayal of the one we’ve lost. For me, I have come to understand it doesn’t work like that. None of the love is lost, even if the one I loved is out of reach. I keep loving because it is my nature to love, forced to find new avenues for the flow. Joy does not require perfection, or the absence of sorrow, or the worldly measures of success. I keep choosing joy because it remains an eternal reminder of Spirit in me and in the world. I choose joy when I smile; when I smell the winter evergreen; when the snow falls silently to cover every blemish; when the cardinal perches on the feeder like a scarlet kiss from heaven.
Advent gifts are celebrated on Sundays and because of the rhythm of weekdays and the 25th, sometimes we celebrate joy for a day and sometimes we celebrate for 6 days. This year we have a week to celebrate choosing joy. Choose joy. Do not let it escape your attention amid the parties and shopping; amid the sadness and loss; amid the expectations and disappointments. Open your heart to the joy that is there, waiting for you to claim it.
While Love may be the most familiar of the Advent concepts, it is also one that we complicate with layers of humanity and ego. In its purest, love is the very essence of who we are. It is the unifying and creative force in the Universe. We usually see love shrouded in our personal history and experience. We feel wounded by love as much as we feel healed by love. Actually, the wounding we might identify is our human response to the actions of other humans, not related to the pure essence of love at all.
Perhaps the original story of the visit of the Magi bearing gifts has contributed to the complication of the celebration of love and Christ’s birth. We measure both the love we give and the love we receive in gifts. We allow large and small, fancy and simple, time and companionship experiences, and yet, we keep ending up measuring love with gifts. A favorite Motown Christmas song implores us to “Give Love on Christmas Day.” We acknowledge that the heart of every gift is love and I just wonder what love looks like beyond the gifts.
This year I want to suggest we Be Love, not only at Christmas but all through the year. When we are being love, we are not only compassionate but also generous with others and with ourselves. I’m not sure how being love looks to you but I invite us all to explore the experience for ourselves. Amid the busy shopping, wrapping and cooking, take time to breathe and be the love that is Christ born anew in us each day.
“Glory to God in the highest heaven, and on earth peace…” This message from the angels in the gospel of Luke focuses us on perhaps the most elusive of all the elements celebrated in Advent. We have glimpses of hope, faith, love and joy but how much do we experience peace? Hanukkah is a celebration of light over darkness, and yet another battle for the Hebrew people who continue to feel the stress of conflict in the world even today. The famous tale of Silent Night and the pause in World War I portrays how fleeting peace can be on earth. Yet here it is, the Advent Sunday and week of peace. What are we to make of it? How can it inform our preparation for the holy birth?
If peace is, at its simplest, the absence of conflict, what if we turned our attention inward? There is no conflict in the spiritual realm (or heaven), so this is an issue for our human experience here on earth. What if our first order of business is not so much the conflict we create among ourselves but the conflict we create within ourselves?
Created in the image and likeness of our creator, then our essential nature is love. How much time do we spend centered in, and thinking, feeling and acting from our love nature? The most basic conflict consuming much of our time here on earth is functioning out of alignment with our true self. I want to be love in expression and I cannot feel peace when I am thinking, feeling and acting out of anger, fear, guilt, worthlessness and pain. Peace calls me back to my essential self of love. When I accept my own struggle to be love in expression and am able to see the struggle of others, I let go of anger and know that I have nothing to fear from others. When I forgive myself for times I have been less than my best, I let go of guilt, even as I seek to make things right with others. When I know myself as the creation of the Divine, I realize I am precious to the creator and my worth has nothing to do with the measures of earth. There is no greater nor lesser in the Creator’s expression. I let go of condemnation of myself. When I am in pain, physical or emotional, I know it is a temporary experience that is not my essential nature. I let go of any sense that I deserve or need to hold onto the pain.
The more I can experience peace within, the less I perceive myself in conflict with others. The more I can acknowledge the unifying nature of love, the more I seek to find a path to understanding the struggles of others and solutions that create a world that works for everyone. As there is more peace within my earthly experience, I begin to see more peace out in my worldly experience. Peace is always one of the infinite possibilities available in each moment. Today I choose peace. I claim peace on earth.
The beginning of Advent is often designated Hope and Unity prefers Faith. It may be a matter of degrees but here is an analogy that might be helpful. Hope is the opening and Faith is the power to walk through, push through the opening. And sometimes we have to “walk by faith, not by sight” (2 Corinthians 5:7) even when we do not see the opening. Openings and Hope are what “representation” is in the media. Let me explain.
Back in the 80’s, single parent adoptions weren’t popular or well known. Single, disabled parent international adoptions were something I hadn’t seen. But I did it anyway. For eighteen months I waded through paperwork, navigated delays and unexpected obstacles and lots of prayer work to bring my son Victor home from India. It was a long journey with lots of opportunities to exercise my faith that if this was my child, as I believed he was, Spirit would make a way for him to come home. I shared my journey to give Hope to others; to let others see an opening they might be guided to walk through. I even have an article from an Indian newspaper documenting “a disabled American woman adopting a boy from India with the same disability”. Maybe that provided hope in another country.
Sharing this time with Hanukkah, we are reminded of how unlikely it would seem that the small amount of oil would last for eight days. Or how impossible it would seem that a small band of Maccabees could overcome a vast army. These are metaphors for the ways that Faith keeps us centered in the infinite supply that comes from Divine Source and the strength, wisdom and guidance that dwells within us all, even when it seems the world is against us.
Everyone needs hope. With more representation of diverse, disabled people achieving success, sometimes in the most ordinary ways others take for granted, we create hope. We long to see openings for our dreams. May each of us find hope this season of Advent and then exercise our faith in an unseen power to move us in the direction of our dreams. The power is within us. Claim it!
A few months after my infant daughter Sarah died, I purchased a blank journal and starting taking notes. The notes were ways that Sarah continued to appear in my life: the angel-wing begonia cutting bursting into bloom in January; the pink balloon drifting across the sky at the cemetery; the adoption pictures I was beginning to look at. There was a healing in writing the notes but there was more healing in the expectancy of purchasing a blank journal and knowing there would be experiences to put on the pages. Faith seems to be a more active form of expectancy than hope. If hope is the blank journal, then faith is the purchase, keeping a pen handy, staying alert for the good unfolding and committing to writing it down.
This year’s advent season also begins Hanukkah, the Jewish festival of light and faith, when good triumphs over evil and hope stands strong in the face of fear. We’ve been through some interesting times the last couple years and it is easy to focus on loss and darkness. Yet faith encourages us to be the light whenever possible and expect to see the light in the darkness. As the late Thomas Kadel admonishes us in the title to his ministry book, we must “Keep The Book Open.” Look with expectancy at the blank page of each day and commit to seeing and noting the good as much as you commit to being the good others see. It is the light of Radical Wholeness within each of us that is seeking expression.
This advent will be the first season of freedom in 43 years for Kevin Strickland. While the state of Missouri declines to give him compensation to begin after 43 years of wrongful conviction, the Midwest Innocence Project started a GoFundMe page and raised $1.5 Million.
While a menorah was first placed across from the White House in 1979, this will be the first Hanukkah celebrated by the family at the Vice-President’s house. Residing there is the first female, Black and Asian Indian Vice-President.
Vaccinations are available and we have the potential to limit the spread of COVID and all its variants. People are traveling again and with vaccinations, people are gathering in homes and embracing loved ones. We have missed the hugs of connection.
Let this season of light illuminate the darkness with the beams of each smile, each kindness, and each connection and may the path be revealed for each step forward in faith.
I’ve been wrestling with my feelings for days and I’m not sure I’m any closer to sorting the feelings out or finding words to express myself.
We are spiritual beings having a human experience. The oneness of our spirituality is often poorly expressed through our humanity and so issues like justice, oppression and inequities often occupy our thoughts. I, like others, have spent a fair amount of time discovering and living into my inner, spiritual wholeness. Embracing the idea that no matter how my humanity appears; no matter how the material world reacts to, judges or discounts my humanity; there is within me an eternal wholeness that cannot be diminished or destroyed.
Do you love yourself? This soulful question is hard enough for people who generally fit the ideal mold held out as leading to success in our world. Most people question their body shape, hair texture, speech, and a hundred other factors and fear they still don’t measure up. For people with disabilities (and other oppressed groups), this is an even more difficult question to answer in the face of ample evidence the world does not love me, value me nor support me being the way I am.
While I have been focused on my wholeness, it seems the material world has been focused on fixing a brokenness. Last week, the FDA, not wholly consumed with COVID, approved a BioMarin drug to treat achondroplasia, the most common type of dwarfism. Intended to enhance growth in a condition noted for short stature, it may not be the panacea you hope it is at first glance. While it may increase height, individuals will not be tall, nor will it erase features seen in the hands, face, body proportions and feet of individuals with achondroplasia. It may allow them to reach things but it may not put the treated individuals out of the reach of ridicule for how they look. There does not seem to be sufficient longitudinal evidence (either here or in Europe) to see if it will really improve long term joint pain and co-morbidities (including apnea). BioMarin’s Chief Commercial Officer projects sales of this drug will eclipse its former best seller, at $544 Million. Given an annual cost of $320,000 and the inequities inherent in our healthcare system, we know there will be disparities in how the drug is dispensed based on race and economics. BioMarin sought input on the drug, primarily from unaffected parents of children with achondroplasia. This sets up a potential dynamic similar to what happened years ago with cochlear implants in the deaf community. Deaf parents were suddenly “neglectful” or “selfish” if they saw deafness as an identity, a life worth living and declined to subject their children to the implant. Dwarf parents may now face a similar discussion if they see themselves as whole even with achondroplasia and decline the drug for their eligible children.
Of course, there are people who don’t want to be the way they are. People who don’t want to be dwarf, or deaf, or gay, or transgender or neurodivergent or different. “It would be nice to be like others,” they fantasize. “It would be nice to be out of pain and suffering. To live without fear in a world that supports who I am.” I am concerned that if we keep working to “fix” people based on the standards of oppression, we skip the work we could be doing to improve quality of life, eliminate barriers and oppressive social structures, and move to a place in consciousness of embracing all differences.
This drug is given around the age of 5-12 to children with active growth plates so decisions are driven by parents. The challenge is always unaffected parents choosing an identity or understanding an identity not their own. These children have a spiritual wholeness within them, no matter what their parents decide. Should drugs be used to eliminate elements of difference, elements of human identity that others devalue? Is the primary goal health or fitting in? What happens to the way society views those with dwarfism who aren’t helped by this drug or who can’t access the drug? Can we believe in wholeness and still seek to alter who we are? I affirmed my wholeness daily during chemotherapy. Healing, for me is what happens when I am grounded in wholeness. I guess I didn’t view my treatment with drugs as fixing something broken as much as I saw it as releasing something foreign. And maybe that is just semantics I want to promote my view. I do believe in our wholeness, we are continually seeking to be better and better human expressions of the Light we are. I will work to release judgement of those who choose the drug for their children. I will work to release judgement of those who long to be different than they are. I can’t claim any superiority around the wholeness I see within each of us. Nor do I deny that it is possible for those choosing the drug to also see wholeness and not brokenness.
Still, I wonder about what happens when we set about eliminating differences in each other—in our humanity. BioMarin has decided tall(er) is a better quality than short. We know that eugenics, as a movement even in this country, sought to eliminate any “imperfection” early on by allowing infants to die without life sustaining treatment. I was put in the back of the nursery to die in 1955 by concerned medical professionals, and Baby Doe cases in the early 80’s allowed parents and medical teams to withhold treatment until legislation protecting the rights of newborns was enacted. We also allowed involuntarily sterilizing primarily developmentally delayed adults (some states allowed this up until 1977). The medical community was a part of how this all unfolded. I was in my early twenties the first time a high school biology teacher confronted me in a workshop I was doing with a genetic counselor. The workshop was about teaching the science of genetic inheritance in humans with compassion and not viewing “conditions” as oddities. We hoped to avoid people teaching in a way that made affected individuals in the text book somehow less than human. This gentleman said, “It makes little sense to discuss how the condition might be inherited going forward when people like you shouldn’t be allowed to reproduce.” Well, there it was, out in the open. Our target audience was resistant to the message. I think I simply said no one needed a permit to have children. I’m sure I had a sarcastic ending in my head about maybe not allowing narrow-minded people to reproduce. I wonder if we have changed?
I am certainly not “anti-medicine”. I am vaccinated and booster-ed. I go to the doctor for support in the ways I can maintain this little body temple. I listen to my body. I am still thriving after years of activity and a dance with cancer. I pray everyone has access to the tools of technology and medicine which allow them to live their best lives. I do not believe my activity, my productivity, the taxes I pay, the children I had the honor to raise, nor the education I got, makes me any more valuable or better than anyone else. As this Thanksgiving approaches, I am grateful for the ability to love myself; to see the wholeness I am; to see wholeness in others; and to continue to work for an equitable and just world for all. If enough people see wholeness and equality in everyone, maybe we can redirect our creative energies in a direction to provide healthcare, education, housing, transportation, meaningful work and basic needs for all of us just as we are.
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Reflections on Diversity: Awareness
October is a month of so many “Awareness” campaigns it can be overwhelming. So many of them are directly relevant to my life and touch those I love. It may be just an alignment of synchronicity: Dwarfism, Disability Employment, Infant Loss, SIDS (Sudden Infant Death Syndrome), Cerebral Palsy, Domestic Violence and more.
In pondering this “awareness” work, I began to wonder what was the point? What is it we hope to accomplish by providing all this information? In all the years of posting, has it made a difference? Is there ever enough information to shift the consciousness that is the source of painful experiences?
We hope that by answering questions and providing information others will finally understand a perspective they may not have experienced. In that understanding, we hope to find acceptance and support for the ongoing challenges of the particular awareness issue we address. In acceptance we hope to gain equity and not only a place but a voice at a table of privilege we may not sit at now. Perhaps we could all begin with knowing we cannot ever understand at a deep level the experiences that are not ours. Not having the same experience as others does not stop us from treating others with empathy and compassion. Make the choice to be kind, it won’t matter how many questions go unanswered. Maybe in deeper connections we actually will learn about one another in a more meaningful way.
In awareness work, I think we hope to make our difference a little less foreign. We try to point towards common ground in our humanity and try to reduce the distancing that happens among us all. We hope that answering questions will somehow quell the fear of difference. Perhaps we could begin celebrating our uniqueness. Difference does not mean “not the same as ____” where we value a characteristic and those without the characteristic are “different”. We are designed to be unique, no two exactly the same. We are all different. Breathe. Be unique and let others be uniquely who they are.
Peace within produces peace without. We are really all afraid of being judged. Awareness campaigns arise out of awareness of the ways people judge us. As much as others judge us, we internalize all that propaganda and we judge ourselves with the same criteria we fear having applied to us. It is the social order, economic hierarchy, biased “isms” we have all been taught. We internalize it and judge ourselves. Love yourself. The funny part of much of the education in awareness campaigns is we attempt to teach that which we have had to learn ourselves about ourselves and those we love. Everyone has something that is their “different”. We all know the rules about success and worth. Toss them out. Find success and worth within yourself and begin to be able to acknowledge it in others.
Today, we had planned a perfect day. Weather predictions were low humidity, a nice breeze and mild temperatures. We would start the day with a lazy breakfast in a local café. Then we would wander the sunflower fields outside Lawrence, take some pictures, and wander back home. Maybe a stop at Sonic for a cherry limeade on the way home. Books to read on the patio at home.
Then came the note last night. Bug sprayers and smoke detector checks today. Random folks invading our apartment. We stayed home to protect the fur babies. There is no schedule and we waited. The morning evaporated without a lazy café breakfast or start for the sunflower fields. When the buggers finally came and went, we opted for a drive through lunch carried to the park with Raymond in tow as a precaution for the still unexpected smoke detector checker. We had to thread our way out of the complex through the asphalt trucks that have abandoned the carefully mapped project as the paved lots slowly transition to some new black top bliss. The breeze at Shawnee Mission Park lake was delightful. Geese honked and swam at a safe distance although Raymond noted their presence with barking. He sniffed and rambled and got bites of hamburger. I came home to work on various diversity projects. It was a different kind of perfect than we had planned. Still perfect.
We have to stop expecting there is only one kind of perfect. Charlie, my luecent feathered cardinal, is a different kind of perfect. My father held me and declared me perfect and not in need of healing. I am a different kind of perfect than I’m sure he and my mom planned on but still, just perfect. In our diversity work, we must come to see all the different kinds of perfect there are without wanting to change or heal any of them. Perfect isn’t a peg shaped to fit in a hole, but a sea of infinite possibilities manifesting one by one, each uniquely shaped to fill its space in the world we are creating together.
When I first had a backyard bird feeder, years ago, I found blue jays honestly quite annoying. They were big birds and often spilled seed on the ground in their attempt to balance on the feeder. They displaced the smaller birds. They were loud and their call strident. The quiet chirps of chickadees and finches were lost in the cacophony of jays.
The tiny cup of seeds I can now maintain on my apartment patio doesn’t accommodate as many birds. Recently, I find the crew mainly softly dull, brown sparrows. By sheer numbers, they bully my cardinals. The chickadees and finches have been dissuaded from approaching the crowded cup. I find that I am excited if a blue jay lands in the pine tree next to the car out front or I hear one down at the mail boxes. The bright blue color and strident call is a promise of something new on the patio.
I am learning to appreciate that embracing diversity means not only welcoming an array of colors but also voices. We need the soft and harmonious and the loud and strident. We learn from each. The Creator designed infinite variety for a reason and for me, did not distinguish one superior to the other. Whether race or ability or gender identity or sexual orientation: the beauty of diversity is all our differences, not just the differences we like the best or are most comfortable with.
Image description: a bright blue bird on a yellowish branch. A dark eye stands out against white feathers and a tuft of blue feathers tops the head. Black and white markings appear on tail and wing feathers.
August 31, 2001, I left my employment in the corporate world on a journey to see where putting my spirituality first led me. After a couple weeks, we had experienced 9-11 and everyone was curious about what I was doing. Adjusting to the abrupt end to a frantic pace of life, I sat in my backyard, noticing I was breathing in a way I was not accustomed to. Without the stressful holding my breath during anxious decisions, I was eating lunch! I began writing “Reflections from the backyard” and wrote more or less at least monthly for the next 10 years. Since I am without the weekly writing of sermons and newsletters, I think I will use the Radical Wholeness blog for a new series of reflections on diversity. Nature seems to be my inspiration.
Charlie is the cardinal who comes to my little cup of bird seed on the apartment patio. We are not really allowed bird feeders at the apartments due to the mess. I felt lost without that connection to nature, so I have devised a little plastic cup of seed nestled down in the cup holder of a porch chair. I keep the mess swept up and generally have a few birds who find the seed. Charlie and his mate Citrine (because she’s a fairly yellow female) are regulars. They had a baby, Little Belle, who came for a while this spring. You might wonder how I can be so certain it is the same cardinal coming to the feeder. Charlie has patches of white feathers at the tops of his legs. I am pretty sure it’s him when he perches on the cup of seed. At first, I guessed the white feathers were a remnant of a healed injury or maybe just a sign of aging. Eventually I got curious enough to do a search for “white feathers on cardinals”. I mean I couldn’t ask Charlie what was the deal with his white feathers could I? Turns out the feathers are the product of “leucism”. Not a true albino condition, Leucism generates feathers lacking the natural color for the bird and it affects more than just cardinals. If you’ve seen crows with patches of white feathers on their wings, and I have, it’s leucism.
My process with Charlie made me reflect on curiosity about differences. I couldn’t ask Charlie about his feathers but my whole life I’ve been expected to respond to personal questions from complete strangers. I’ve been expected to educate others, even my doctors, about dwarfism. Every October I post thoughts during “Dwarfism Awareness Month”. As I listen to some of the discussions about dismantling racism and other “isms”, I understand the lament from marginalized people that it is exhausting to keep responding to the questions of others. And I realize sometimes I am the “other”. So here is a suggestion: if you are curious about a difference (and I hope you are), do some research. There is a world of information available these days from books to podcasts to movies and specials to online articles. Stop expecting other people to educate you; make themselves vulnerable for your research; and putting the burden on those already carrying a burden. This is NOT a criticism of curiosity! Just an invitation to take that curiosity on as your own adventure, not the responsibility of someone else to carry you through the information aisles.
Image description: red northern cardinal perched on a black iron rod, next to a blue chair with snow on it and a plastic cup seen over the top edge of the cup holder in the chair. The cardinal has white feathers around its belly and top of its legs. White railing and green bush in the background.
“To love life truly is to be whole in one’s parts; and to be whole in all one’s parts is to be free and unafraid.” Howard Thurman, from Meditations of the Heart
To be whole in one’s parts, to me, includes all the parts of my humanity, especially those parts others might point to as demonstrations of a lack of wholeness in my spirituality. Wholeness is not present either in my humanity or in my spiritual self but in both my humanity and my spiritual self.
Until I was eight, I had never actually seen another person who looked like the humanity of my body. My first encounter was frightening to my eight year old self because he was a tiny man at my eye level, in a wooden cart on the streets of downtown Lawrence, Kansas, and he was selling pencils. This challenged every aspirational goal in my child mind already indoctrinated with ableism and cast doubt on the way in the world I had been so confident of prior to this encounter. I recoiled at the idea that this was my destiny or how others might see me. Within the next year or so I was introduced to the national peer support organization for people with dwarfism, Little People of America (LPA). At a regional meeting I met people who might not look exactly like me but they were all short. They were teachers, parents, an engineer for Texas Instruments who flew his own plane—they had lives and careers and families. I began to breathe. There were possibilities I could see as reflections relevant to me and my capabilities.
In those early years of LPA, I frequently heard the concept that we had to live in two worlds: the world of dwarfism and the “big world” of everyday life. You could not exclude one or the other in a healthy relationship with the whole of your parts. I observed people who only wanted dwarf friends or spouses; people who lived for the times of conference when everyone who gathered at hotels was under five feet tall. I observed people who denied their dwarfism (seems odd but it happens) and only wanted to associate with and marry people of average height as a measure of their success and “normalcy”. I did not see either exclusive attitude as healthy. The physical reality is that the sea of short statured people in the hotel lobby are my people and, to some extent, how I see them is how other people see me. If I cannot see the individuals in the lobby as whole, worthy and just like me, chances are there are ways I have internalized ableism and do not see myself as whole and worthy in the world. The other physical reality is that I live and work in a world that is not constructed physically or sociologically to support the ease of my everyday existence. How I carry myself and the self-image I have of myself is part of how I navigate the everyday world. I am both dwarf/disabled and live in a world which is dominated by those who are not. I have to be able to see myself as whole in both worlds. If I see myself as “less than whole” in either world or both worlds, I will respond to life as defensive and wounded. Just my opinion and experience.
In Diversity, Equity and Inclusivity work, I have begun to observe a dynamic that advocates either the work is done in the silos of identification or in a mixed community of oppressed and oppressor identifications. Again, I find work in both arenas brings a sense of balance and progress for me. In silos of identification with oppressed groups (dwarf, disabled, female), I find the safety to explore how life experiences feel, the barriers I encounter and how to address oppression. There is a sense of community in shared experiences. I continue to experience interesting interplay in the silos, where sometimes dwarfs (and other identified disabilities) distinguish themselves away from disability in general and where silos of dwarfism and racial identification are intolerant of other silos. I’ve observed intolerance of LGBTQ+ and racial minorities in the dwarf community and I’ve observed intolerance of disability in racial minorities for instance. Distancing is always a byproduct of fear and indoctrination with the “isms” we seek to dissolve—but that’s another blog post. In silos of identification with dominant groups (white, cis-gendered, heterosexual), I find the safety to explore where are my blind spots, how do I actively or passively contribute to oppression of others, how do I benefit from that oppression and how can I be a better ally, both within my silos of oppression and out in mixed community. In a mixed community, I may be primarily a listener, bearing witness and learning from the oppressed experience of others, or an educator, sharing my experiences of oppression. While I do not pretend to know the depth and range of experiences of friends who are Black, I have found an intersection in which most Black people and most disabled people have experienced the “invisibility” of being ignored by White, Abled people when we are standing in plain sight. The response is always, “Oh, I didn’t see you.” It is in mixed community those experiencing oppressed characteristics can begin to identify common experiences. Marriage equality is an issue that remains for those with disabilities who have essential benefits from the government and risk losing them if they marry. In addition to convincing the broad category of able individuals that equality benefits everyone, it behooves those of us with disabilities to have those who have advocated for racial and LGBTQ+ equality to join in the advocacy battle still ongoing. They have known the pain of being told your love is not good enough or worthy of marriage.
In community or the realm of “one heart, one world”, we can join our powerful spiritual oneness with the unique gifts of diversity manifesting through our humanity and seek ways to move forward together; to evolve our consciousness in the direction of “we the people” meaning all people are entitled to and capable of life, liberty and the pursuit of happiness. I do not feel it is contrary to this vision of unity to seek strength and a place to do personal work within the space of those who share common aspects of my humanity. Imagine the freedom and power in allowing ourselves to be a part of both/and as we all discover the wholeness of all our parts.
Image description: Black and white image of interlocking Tao symbols making a whole circle.
“For my yoke is easy, and my burden is light.” (NRSV, Matthew 11:30)
Often, we think spiritual practice is more complicated than it really is. Or we make it more complicated in our heads to justify not trying it or not staying with it.
What is mindfulness? Jon Kabat-Zin is quoted in a Positive Psychology article as offering this: “The awareness that arises from paying attention, on purpose, in the present moment and non-judgmentally” (https://positivepsychology.com/what-is-mindfulness/)
The opening quote is from the Christian New Testament so am I saying that Jesus advocated mindfulness? Well, let’s play with that a moment. Jesus talked quite a bit about paying attention, looking for those who had “eyes to see and ears to hear”, which clearly wasn’t everyone. He also admonished those around him not to judge. He said there was more to life than the appearances available to our five senses. Mindfulness is not tied to any religion and for that reason is usually taught as a secular practice. This does not mean that if our practice is grounded in a spiritual foundation, we can’t build mindfulness into our spiritual practice.
A yoke can be the yellow of an egg and it can be a tool to keep two animals working together. While the animals may chaff at the restriction of the yoke, by working together, in alignment, the task is shared and becomes easier. For me, aligning myself or yoking myself to mindfulness, is simply the practice of reminding myself throughout the day that I am more than my emotions and more than what is happening in my life. Although I can’t control what other people do or the events that unfold during the day, like traffic or weather, I can always control the thoughts I hold onto. I can remind myself that in the midst of chaos, there is a peaceful center deep inside my mind. I do not always go there or I’m not always able to get there, yet I know the peace is always there.
In the midst of pain or “dis-ease”, in the midst of depression or uncertainty, without judging that human condition, I can notice it and choose to invite my mind to seek out places in my body and my life doing well. Gratitude can lighten the load of sorrow as I inventory the comfort I sit in, the food available, the flowers on my patio, the delightful way my heart keeps beating. I have to be “on purpose” to direct my thoughts in specific ways. I have to bring my conscious awareness to a directed focus rather than let my mind wander in unconscious ways down a familiar rut of suffering by comparison and judging my human condition. There is some effort to stay in the yoke and then I notice the weight lightening. From a spiritual perspective, I can add the awareness of the endlessly creative “Radical Wholeness” within me that arises knowing I am created in the image and likeness of the divine.
Not broken or left out. I direct my awareness to the web of energy I am a part of, physically in this moment and eternally, in every moment. The barrier of my body thins as time becomes less relevant and the now expands.
Try on the yoke of mindfulness and see if it lightens your burden. Image description: a yellow-orangish sunflower with a brown center against the background of green tree and bright blue sky. The rough and prickly stem has two leaves and a bud.
Over the past several months, we’ve been inundated with the discussion of “fake news”. Information blatantly false or without basic underlying evidence which is repeated as news. The irony is that the more frequently people repeat it, the more it is believed. No one looks for any underlying truth.
If we are honest, we’ve been dealing with fake news for years. I’ve called it the false narrative. Lots of people call it “the inner critic” or “monkey mind”. It is the headline that blazes across our inner vision when we try something new or reach the boundary of our comfort zone. It may be something we’ve heard since childhood, or seen repeatedly in the media, or read in a magazine. It focuses on something within us that must be fixed before we can be whole and attain any level of happiness or success. Often we go years without questioning these headlines! “You can’t” “It’s impossible” “Get a __________ (job, education, relationship, house, car, etc)” The fix may relate to our size, shape, color, lover, way we talk, way we walk (or don’t walk). It can be any of a gazillion (don’t bother looking it up, it’s a big number) ways we try to make others and, ultimately ourselves, seem less than whole.
The real news here is that the wholeness we are trying to fix our way towards already exists. We are born with our eternally whole self within, waiting for us to recognize and claim it. Our inner knowing waits for us to stop trying to fix the outside to make the inner whole and instead, draw on the inner whole to heal and transform the outside conditions we desire to change. Notice I said, “we desire to change” not “the conditions others expect us to change.” What is it you truly desire? When we take our focus off of “things” (house, car, job, relationship) and focus on conditions (being peaceful, wise, loving), we might discover what we seek is right there inside our eternally whole self.
One practice I find helpful is to dialog with the false narrative. Whatever the message is, get curious in your dialog. “Why is that so?” “Is that really true?” “When did I begin to believe that” (It is interesting how we internalize the false narrative and begin to believe it.) Then begin to offer alternative messages. Some people think affirmations, or positive statements, are just new-agey nonsense. Affirmations are simply an alternative to the negative statements we embrace without question. In the movie The Help, the maid or nanny teaches the little girl three statements, “You is smart; you is kind; you is important.” These were just statements as an antidote to the messages the mother was carelessly instilling in the child. Why not use positive statements to replace the false narrative you allow to play on endless loop inside your head? You are filled with wisdom; you are love in expression and you are the unique pattern of humanity only you can fulfill. What are you waiting for? Begin a dialog with your false narrative.
Image description: blurry background with white lettering: It’s not your job to like me-it’s mine. Byron Katie
The longer I do disability advocacy work, the more irritated I am with the use of “special needs”. “Special” has become a euphemism for the minimization of issues for disabled people. We have made it the opposite of its original meaning. I have seen the needs of the disabled portrayed as less important, less essential, less feasible and therefore less of a priority for Normal people. Yes, I used Normal because that is the terminology for “able bodied” that people who use “special needs” for disabled apply to themselves. A more accurate word for normal might be average; the average person can overcome the barriers. With increasing numbers of people affected by disability, we could be approaching a world in which the average person has some kind of disability. That might produce some interesting changes.
For years we have accepted Maslow’s hierarchy of needs as universal, essential needs of all humans. As we examine and try to dismantle systemic racism, we learn how racism has denied equal access to essential needs to those who are not white. As we examine homophobia and the various permutations of fear around gender identity, we learn how religion and legislation has denied equal access to essential needs to those who are not cis-gendered, heterosexual. Yet when we look at access to essential needs by people with disabilities, those needs suddenly become “special needs”. We look at correcting racism and homophobia as justice issues for individuals claiming their own power, yet we characterize the disabled community as asking for accommodations for their special needs, making them beggars, not powerful claimants. Language matters. The meaning we give words betrays generations of bias.
This year’s Oscar ceremony was honestly, not as lively as many before. However, there were some interesting aspects. A film up for best documentary, Crip Camp, brought wheelchair users and service dogs to the ceremony. For the first time we saw a wheelchair accessible stage—and the awkward way abled people were not sure how to approach it. A film up for several awards, The Sound of Metal, brought deaf people to the ceremony. Several of the socially distanced tables had ASL (American Sign Language) interpreters signing for those in attendance. The deaf presenter, Marlee Matlin, signed and had a voiced interpreter. It might have made a greater impact if simply signed her remarks and illuminated, for hearing but not signing folks, our universal need to understand what is being communicated.
Disabled adults are not childish. Although some disabilities include developmental and intellectual challenges, many disabilities do not include those characteristics and disabled adults are far more capable of functional decision making than they are given credit or opportunity. It is well documented that large numbers of people fail to speak directly to disabled adults. People in authority, from business to social settings, look for an abled person to speak for the disabled person. It happens far too frequently when I am with able bodied friends and family. It is demeaning to the disabled adult.
Affordable, accessible, safe housing for the disabled is not a special need. Disabled housing is often segregated apart from general apartment complexes, restricted to poverty level incomes or available only to those who can afford home ownership and renovation. Lack of housing is a justice issue. Sustainable income for work and a safe work environment for the disabled is not a special need. Subminimum wages and the refusal to be flexible in work environments is a justice issue. The pandemic has brought to light the hugely false premise told to decades of disabled, qualified applicants that most jobs cannot be done at home. Disabled adults getting government benefits should be able to marry without the economic coercion of losing benefits. Access to healthcare and supportive services is a justice issue for everyone. The ability of the disabled to make their own decisions about reproduction is a justice issue. Did you know that into the 1970’s, some states made involuntary sterilization of the disabled legal? Access to education is not a special need. Teachers were put in an impossible situation with the pandemic. Overnight they were expected to figure out, on their own without guidance, how to provide access to education for students without internet or computers and, for many students who may not function well without direct and supervised input. We put a man on the moon before we had legislation guaranteeing children with disabilities the right to an education. Now we have a rover on Mars we can maneuver but we cannot coordinate education for disabled students because it’s just too complicated. There is a justice issue when events disproportionately affect marginalized groups over privileged groups and the disabled community has a host of justice issues waiting for attention.
Everyone needs healthy food, affordable and accessible housing, access to healthcare and a sense of safety and belonging. We all need a way to contribute to our world, meaningful work to do and a way to play and relax. In today’s world, we all need a means of transportation and ways to communicate and connect. We all need dreams to grow into and a foundation of worthiness to grow from. The privileged take all these things for granted. Systemic racism and all the other “isms” of oppression, including “ableism” have forced marginalized people to aspire to having these basic needs being met.
Justice is a “material world” issue. In the spiritual realm, we are all whole and we all have access to everything we need. In our Oneness, there is no need for labels, no obstacles to the desires of our heart. In the material world, our humanity driven ego has constructed systems of better and lesser and barriers that maintain those divisions. I don’t know about you, but once I decide there is a difference between me and others, I struggle not to make the others “lesser”. Brene Brown and others speak of the “de-humanization” which is a part of oppression. It is so ingrained in us, it takes tremendous conscious thought to first see how we have made the other lesser and de-humanized; second see how de-humanization is influencing our beliefs and actions; and finally change our belief and our action. If we truly believe “With God, all things are possible”, then we can begin now to visualize a world in which we cease to make others lesser than ourselves. We can visualize a world in which everyone’s needs are met in ways that really work for them. Once we see it, we begin to be it. We begin to work for justice for all. And that really will be special.
Image description: small walker at the door threshold. A mat is visible on the porch with the word HOME.
I have had people—spiritual people and well-meaning people—say to me, “I just feel so bad for you” “I feel sad for you” “I feel so sorry for you.” The first couple times it happened I was too stunned to say anything but, “Why?” During my sarcastic years, my angry response to pity was “So you feel bad/sad/sorry because I have a house and a car and two great kids and a successful career?” (Yes, I believe a life well lived is the best revenge.) Responses to my sarcastic retort helped me see that the mind that formed the original statement could not fathom the sarcasm in my response. At this point I have come to believe that perhaps it is just a big misunderstanding.
When people believe they would be unhappy living with my disability, they assume that I am unhappy with my life. We often devalue what is outside our zone of familiarity. One of the benefits of travel is the opportunity to experience different environments and cultures in which people find happiness. Our discoveries, however, require us to leave our expectations and assumptions at home. People live in houses with dirt floors and drink warm beer and never travel more than five miles from home and are happy even if those are not in our comfort zone.
Surprisingly enough, I do not cry myself to sleep at night because I am not five feet tall; nor do I wake disappointed that I am not “healed” into a growth spurt. Are there times when I wish the world was designed differently? Absolutely! Do I envy people whose bodies do things that mine does not? No, not really. How would you live this life? Neither of us really knows.
A disturbing survey recently revealed that those entrusted with our healthcare are among those who devalue the lives of people with disabilities. “A new survey of U.S. doctors finds that more than 80% believe people with a significant disability have a worse quality of life than those who are not disabled, underscoring how physicians’ perceptions across specialties could negatively influence the care of the more than 61 million Americans with disabilities.” (https://khn.org/morning-breakout/physician-bias-against-people-with-disabilities-or-obesity-gains-attention/, 2.2.2021
I mentioned spiritual people have made statements to me. The inference I hear is that people with average bodies which function differently than mine are somehow spiritually superior or better able to connect with a higher power which might be a source of healing. Pity always comes from a place of superiority and shame comes from a place of inferiority. I mostly have no shame about my physical vessel, and I endeavor not to pity others. What if no one was superior and no one was inferior? In our world of duality, many people find this incomprehensible. Even when we say, “All people are equal”, if you place a photo of a visibly disabled person along side a person dressed nicely and without a visible disability and ask which is superior, I am guessing at least 95% of people will select the non-disabled person as superior. Most cultures have a bias against disability which results in devaluing the lives of disabled people. Often that bias is actualized into limiting resources for people with disabilities. Physicians, employers, housing managers, and spiritual leaders impact the lives of people with disabilities. Bias shows up intentionally or unintentionally in how they serve others.
How do we begin to overcome this bias against believing people with disabilities can love their lives and stop saying stupid things to people with disabilities?
First, we might begin with the premise that life is precious. This is not a “when does life begin” debate or debate about the pros and cons of abortion. Let’s content ourselves with the big enough bite that considers “life brought forth into earthly existence”. Every expression is a celebration. Try to bring to mind all the expressions of life you feel are sad, bad, worthy of pity. What if you are wrong? Breathe into letting go of your superiority. Breathe into the shock that I just implied your pity means you are feeling superior.
Second, make a list of the things you value in your life. Now consider that some of the things on your list are also on the lists of other people, including people with disabilities and other people may have things not on your list. Life is messy and glorious and filled with infinite possibilities. If your list is short, breathe into a new sense of gratitude for your life. Expand your awareness of the gifts in your life. Be ok with your list. My sarcastic list was what felt like my values in my 40’s and 50’s. I’m retired. My mobility is impacted and I no longer maintain a house. My list changes, and my life remains valuable and precious to me. My daughter does not drive a car and while that is inconvenient, it does not diminish her love of life (my daughter gave permission and affirmation for this statement; my son doesn’t drive but has a harder time understanding and communicating abstract concepts so I am not presuming to speak for him).
Third, notice how you view your own and other’s humanity as a series of pluses and minuses. There is an exercise in awareness around privilege and oppression that invites you to take a step forward if you have various privileged characteristics. The object is to make apparent the way our characteristics are valued by our social/legal system and that some people appear to be ahead of others. When we internalize this series of pluses and minuses, we begin to see ourselves as more than or less than others. This can lead to some unhelpful behaviors: envying others; arrogance; resentment; pity. A level playing field in social justice and spiritual unity allows everyone to live free of pluses or minuses. We can only get to a level playing field by beginning to experience it ourselves and becoming aware of our internalized pluses and minuses.
Fourth, when you have the opportunity, engage in meaningful connections with people with disabilities without the assumptions you might usually come into the conversation with. Even people with disabilities have assumptions about different disabilities. Instead of your usual thoughts, assume this other person loves their life; assume they have a gratitude list which may or may not match yours; assume they have interesting dreams and ordinary fears. Begin to notice moments in which you feel superior or inferior to others. What is that about? Take time to reflect on Radical Wholeness in you and in other people. Do you judge your/their spiritual life based on your/their physical expression and life experiences? What if that judgment were not true? I do not experience my spiritual life as either lacking or superior to those with different physical, mental and emotional experiences. I am not a martyr nor a guru nor a failure. I am just me, living my one wild and precious life the best way I can. What if we could understand that and support that in everyone?
Image Description: Garden flag is sitting on concrete floor with heart shaped flowers in red with green earth and blue sky in background, kissing birds on top of the center heart and the words Love One Another. A pot of purple pansies is to the left at the bottom and a pot of yellow pansies to the right. White rails and green leaves in the background.
I have two (or maybe three) very different lived experiences that put me, sometimes involuntarily, in a teaching position. The situation becomes a teaching moment because I have made a commitment to be an agent of change around the topic. I say that the moment is sometimes involuntary because there are lots of times I voluntarily teach, lecture, write or advocate for the change I desire. Then there are other times, when I am tired or irritated and stressed, when the teaching moment arises and I have to choose to be true to my commitment to be an agent of change or just have a moment of petty humanity and tantrum.
The first lived experience is grief. As a child, I lost a parent. As a young parent, I lost my first child. By 29 I had experienced my share of grief and was disappointed in the social taboo of grief. We could talk more openly about sex or drugs than we could talk about grief. I desire to normalize both death as a part of the ongoing process of life and grief as the human response to losing what is precious. This challenges me more in ordinary conversations than in times, like in this piece, when I choose to talk about advocating for normalcy. Here my intent is clear and my path chosen. When I talk about the poignancy of birthdays for children who never grow up, others experience discomfort which causes them to say the kinds of things that remind me why I want to normalize grief. “But you have an angel in heaven.” “But you have other children you can celebrate.” And now I am teaching. Teaching that minimizing statements are not helpful and actually dishonor my grief. Teaching that when I state facts and my emotions, you are not required to “make it better for me”. You can just be present to my loss without needing to minimize it. Feel your own feelings. If I have given one other grieving parent permission to celebrate their child and acknowledge their grief, then the struggle I experience in those involuntary teaching moments is the price I pay for change.
The second lived experience may really be two separate, but overlapping, lived experiences: as a woman with a disability—and with dwarfism. Some might consider that one experience but there are unique aspects to each. My commitment is to advocate that each condition is truly an expression of spiritual and human wholeness. Each person affected by disability and/or dwarfism is entitled to “life, liberty and the pursuit of happiness.” We should have access to gainful employment to the extent of our abilities, quality healthcare, accommodations as needed in the workplace and in affordable housing. We should not have our dreams limited by the low expectations of others. So when I am weary and just need to get one more errand complete, the teaching moment of someone pointing and laughing, “Look, it’s a midget”, feels like a push over the edge of endurance. I tend to be much more tolerant if there is a child involved. “Is there something you’d like to ask me?”
I try to muster a peaceful reply when the initial volley is irritating. “You are the smallest person I’ve ever seen.” “Is there a prize for that?” is often my reply with a gentle smile. I try to stay open to dialog if the person isn’t rude or aggressive. I try to stay centered in the truth I know about myself and be compassionate with those who remain stuck in the ignorance of years of portrayals of people with dwarfism as clowns, incompetent, childlike, and subhuman oddities. My struggle in that moment is the price I pay for changing the world’s perceptions of people with dwarfism.
Interactions around dwarfism tend to focus on size. Interactions around disability tend to lump me into a larger group of “people like you”. Honestly, once you get to know me, you will realize there aren’t people like me. But if you mean people who use walkers or have mobility issues or encounter a world filled with physical barriers, then I am willing to engage in teaching moments around disability. Comments around “people like you” often come with pity. I struggle with offers of help that seem much more about the person needing to feel good about themselves than any perceived need I might have. And just to be clear, every need you perceive I have, I may or may NOT actually have. “I said today I was going to be helpful. Can I help you with that?” The red flag has already been raised. I’m her cause for today. She needs to feel good about herself and I have no idea where that comes from in her story. “No, I’m fine,” is usually met with a frown. “Let me help you,” she may insist. I’m interfering with her good deed schedule. My need to normalize the capabilities of people with disabilities is messing with her need to be perceived as having more power and capability than people with disabilities. Now right there, I know many will feel I crossed the line. “She was just trying to be nice.” Nope. She was trying to be superior. She was reinforcing her belief in ableism and the power she holds over people with disabilities. Staying the course of doing what I am perfectly capable of doing, while maintaining tolerance towards those who would dismiss me is the price I pay for change. Expecting accommodations for things designed to be inaccessible is another territory I won’t even go to now!
I would really like the world to be different right now. For all of us. I’d like us to be able to see one another as equals despite any differences in our humanity. I’d love for us to see the Radical Wholeness in each one without having to say we don’t see any differences or try to ignore the humanity of each one. Someday, not one person will hear words that betray a belief they are less than anyone else. I envision a day when we don’t fear our differences or fear the appearance of lack in the world or fear we are not enough to be valued in the world. Until we get there, I accept the price I pay to advocate for change. It is not too steep a cost for a better world for all. (Image description: coins laying on a mat that says Live, Laugh, Love)
The page on the calendar has been turned to reveal a new month and a whole new year. In the northern hemisphere, winter has begun, and New Year’s Day dumped a bunch of snow on my location. Everywhere you turn there is talk of newness: resolutions or intentions, new leadership, new projects, and new hope in alleviating the oppressive confinement, death and struggle of the pandemic. When you live with chronic conditions and disability, it can be difficult to imagine anything new. The pandemic has forced many people into the routine people with disabilities have known for eons. There is a sameness to the days; an isolation to the lack of going out when transportation and mobility are challenges; a longing for some shift in the routine. While the vaccine offers hope to some to return to the days of wandering outside our homes, for others the vaccine is unlikely to change the routine of the days. So, for you, is there anything new right happening in 2021?
I am reminded of the story in John 5 of Jesus telling a man languishing by the pool of healing to take up his mat. “One man was there who had been ill for thirty-eight years. When Jesus saw him lying there and knew that he had been there a long time, he said to him, “Do you want to be made well?” The sick man answered him, “Sir, I have no one to put me into the pool when the water is stirred up; and while I am making my way, someone else steps down ahead of me.” Jesus said to him, “Stand up, take your mat and walk.” At once the man was made well. . .” (John 5: 5-9 NRSV) There are several key points in this for my contemplation of something new in 2021.
First, when Jesus asked if the man wanted to be made well, instead of saying, “Yes! Heck Yes!”, the man offered excuses for how he had not been able to get to the healing pool. How often do I profess to want something and then spend a really lot of time making excuses for how it’s not going to happen? It is an easy trap to fall into, especially with conditions not conducive to change. I want to exercise more but…I can’t find a heated pool with sloped entry…it’s cold and messy out…the weather makes my joints hurt more…there’s nowhere to go for a walk… See how easy it is to list excuses and allow the thing I profess to want to not happen. Because I have an excuse.
The next key in the story, however, is what I like to call grace. Grace is not earned or measured. Grace here is the idea that the Universe doesn’t care about your excuses or even that you have been stuck in excuses for quite a while (like 38 years). Jesus spoke a healing command anyway. Knowing what is in our heart, even if our mind is still making excuses, if our soul is ready, change is going to happen. “At once the man was made well.” How was the man made well? Was it something outside the man (Jesus, as an outer agent) or something within the man that responded to the command? I rely on a metaphysical interpretation of the Bible that goes beyond the literal words. For me, Jesus is an example of what is possible, (the things I do you can do also, and more John 14:12). For me, Jesus speaks as the universal and eternal Christ or I AM of my being. For me, it is the Radical Wholeness within me which responds to the idea of taking up my own mat and changing my outer existence. Radical Wholeness is the inner essence of us, always present, always whole, limited only by the way we access it or ignore it. Waiting by the pool represents our tendency to believe in limitation, ignore our Radical Wholeness and wait for someone or something in the outer conditions to help us, to lift us up, to make a change before we can do anything. The call to change is to act! Stand! Take up your mat! Beyond the literal meaning of standing and walking, Radical Wholeness can express through any action we take on our own. There is no need to leap from a wheelchair, run a marathon, be able to hear or to see. There is no requirement to suddenly become able to become capable of taking personal action to change our lives. The Diving Bell and The Butterfly is a book written by a man blinking his eyes.
The pandemic will not end tomorrow. Chronic conditions may not go away; physical disabilities may endure. The real question is whether, or not, you are ready to create something new anyway? Is there anything, tiny or big, that you can do differently in 2021 that will make a change in your life? Or will you be content to offer another year of excuses for why nothing will change and leave the Radical Wholeness within you untapped? It is entirely up to you!
Image description: snow on a white rail with a dark green bush and snowy pine tree in the background
It’s a new year. Will you be content with excuses or will you make a change?
It is that season in the United States, whether you are spiritual or not, when everyone is encouraged to make a list of what we are grateful for. Some call it a list of your blessings. Thanksgiving becomes a test, sometimes, of whether or not we can see enough good in our lives to become content and appreciative of what we have. Here is the tricky part that has happened in my experience; if I can look within and see myself as whole, complete and part of the divine Allness, then everything I see in my life becomes a part of that wholeness. If, however, I look within and see myself as broken and lacking, then all I can see is the lack in my life. At that point, my list of what I am grateful for only has an entry on every other line with gaps in between which my mind fills in with the things I don’t have that I imagine would make me happy—things I’d have if I were truly whole and complete. This is what we’ve learned, often in family, in the media, in our social circles: that there are specific things on the checklist which are required to really be happy and successful. If something is missing or lacking in this physical journey we call life, we are not whole. Grateful becomes a superficial attitude and platitude.
Over the years, being able to experience gratitude as a spiritual sense of wholeness within me first, even for just brief windows of time, has allowed me to use that experience to guide me when I am seeing myself as broken and lacking. Knowing the wholeness truly does exist within me, the blessing list becomes pieces I am picking up to recreate the whole—pieces I use to reconnect with my inner sense of wholeness. It becomes easier to gather a few pieces, one grateful blessing at a time, until there is that sigh of my soul that says, “Ah, there it is! Wholeness! Everything I am, everything I see, every thing I possess is a part of my wholeness and I am whole within a Universal wholeness.” That transition may be easier if I begin looking at nature, or it may be easier if I begin looking at the smallest, simplest things. Whatever my mood is, I do not believe there is a specific list of how wholeness manifests and that is the radical part of the concept of Radical Wholeness. I am whole without being tall, without being partnered, without being employed, without being perfectly mobile, and without being completely pain free. Those aren’t gaps, they simply are not part of the wholeness I AM right now! I feel gratitude centered in my wholeness. I experience gratitude as a deep, sincere contentment.
The pandemic, quarantining, economic upheaval, social unrest and a bit of chaos in every corner of the world has many of us hesitant to begin a list of gratitude this year. Our mind is too focused on what is missing. We see ourselves and our world as broken and lacking. We are not broken and we are not lacking. We are whole and complete within, even if there are temporary conditions outside us or in our bodies trying to convince us we are not whole and we are not complete. Try centering yourself, breathing into a sense of yourself as whole within a larger whole, before you begin a list of blessings. Knowing your wholeness allows you to see that wholeness present all around you. I am grateful for Radical Wholeness and the opportunity to see it in each of you.
Image description: an ivory pitcher with a silk arrangement of orange, russet and green leaves and flowers with a dark green framed picture of a field mouse gathering grain propped against the pitcher.
If there are places in this blog that you think I sound angry, I am not. I am impatient for the awakening among all of us of the commonality of our struggles and our divinity. If there are places in this blog that you think I am too blunt, I cannot apologize for my approach to challenges. There are no names so I am not calling anyone out or trying to attack anyone. This is just me wrestling with an issue in an open dialog.
I have dwarfism. It was dwarfism awareness month in October and I am fully aware, as many of you are, I have dwarfism. I have a disability. Dwarfism and disability are two words people seem to be uncomfortable saying. Instead of saying these two words people say what feel to them to be softer, gentler words they are more comfortable with: little person, vertically challenged, height impaired, differently abled. I suspect part of the discomfort is a well-intention-ed avoidance of offending me (or anyone these words are directed to) and part of the discomfort is acknowledging that these words are part of a package deal. Avoiding the word is a way of denying that the rest of the package deal is real. Marginalized and oppressed groups are familiar with the package deal and those with privilege are becoming familiar with the depth of denial we will burrow into. Marginalized and oppressed people are becoming aware of the degree to which we have internalized the messages we receive and the denial within ourselves.
The package deal for me involves the bias associated with the words dwarfism and disability; a history of institutionalization and denial of education; the social isolation of difference; the inconvenience of functioning in an environment not built to support you; the constant proving yourself worthy to sit at the table with the privileged; and the strain on family relationships when you are the only one disabled. Please understand, I am still working on my own denial. For years I avoided the word disability because I wanted to deny the reality of the package deal. I kept hoping that even if I was short, I wouldn’t be judged on sight; my accomplishments could speak for themselves without me proving myself over and over; I’d be accepted in social relationships; I wouldn’t be the only one different in my family. Dwarfism is a medical diagnosis. I can live with that. I am over denying disability because it simply is the reality I live in. Denying does not minimize any of the package deal. For privileged folks, denying the reality of the package deal means no one is responsible for changing the reality. No one has to acknowledge the inequities, bias and damage being done to other human beings.
When we get over denial, sometimes we move to pride. Not every one does. Not everyone gets over denial and not everyone moves to pride. I do now. I began to distinguish between how the world viewed me and how I viewed myself. If the world chooses to judge me as less than, broken or flawed, I could see myself differently. My Dad would not listen to talk of institutionalization. Although no one counseled me, the salutatorian, on college, I found it on my own. No one thought I’d succeed in law, but I persevered. If the world chooses to create physical and social barriers, I can see them as obstacles but not defining limits on my potential. Whether the world sees me as worthy or not, I can claim my own worthiness. Every family has complicated dynamics; being the only one different in my family of origin is just my dynamic. As a parent, I created a family of origin in which my children saw everyone in our house had dwarfism and we still have challenging dynamics.
I have dwarfism. I have a disability. To avoid these words may make you more comfortable but it also ignores a block of my life experience. You are saying you are more comfortable not looking at the challenges and the struggles I contend with daily. You are saying no one has to change the way society and government and religion looks at, interacts with or excludes people with dwarfism and disabilities. Honestly, although it may make you more comfortable to say “little person” or “differently abled”, it is not really a gentler way. I was amused thinking about the LGBTQ community being “differently oriented” or BIPOC being “differently hued”. “Differently” assumes there is a “right” way and a “different way”. It is not a gentler label.
One of the keys for me to be able to shift from denial to pride about these labels everyone is intent on applying was an understanding that ultimately, I am more than my body, my intellect and my emotions; more than the labels placed on me; and more than my struggles. The Truth is I AM a spark of the divine, clothed in this journey through a human experience in the particular body I have. I have the abilities I have. I have the gender and sexual orientation I have. I have the race and ethnicity I have. There’s nothing different about me or anyone else because each of us is uniquely human and each of us is equally divine. That is the beauty of Radical Wholeness, the diverse way spiritual wholeness shows up. I hope some day the labels we use stop coming with such a heavy package deal or maybe we stop labeling people and just label canned goods. I hope someday denial and marginalization won’t be the primary way we deal with our differences.
Image description: walker on the threshold of home with welcome mat
I encourage you to keep reading because this may not be the blog you think it is.
Let’s begin with the premise that we are spiritual beings having a human experience. Made in the image and likeness of Divine Beingness, without exception, each of us can access a perspective that sees a like being in each other. By looking beyond our human vehicle to the essence of each of us, there we are, whole and one in spirit. The second part of our premise brings us back to our humanity and that human experience. If our sacred beingness arises from a Divine Source, our human expression seems to arise, to some extent, from our genes. Those DNA sequences determine eye color and hair, gender expression and a host of other characteristics.
In 1990 the human science community undertook an international project to map the entire sequence of human genes. What showed up where? I recall there was a fair amount of discussion of the ethics of what would happen to the information if we knew the genetics of each person. The project was completed in 2006. This year the Nobel prize in Chemistry goes to two women (a first), Emmanuelle Charpentier and Jennifer Douda for their CRISPR technology. Simply put, CRISPR is a way to edit and alter genes. The technology is being used in several trials to “fix” broken genes that cause lethal conditions in humans, such as sickle cell disease and SMA (Spinal Muscular Atrophy). I’ll put a link to an article at the end if you’d like more scientific information.
If healing is a return to wholeness and we’ve discovered a way to fix broken genes and make them whole, what could be the problem? How could anyone be against healing? Let me be clear, Radical Wholeness is not against healing. From Buddhists to Christians to Pagans, most of us would like to eliminate pain and suffering. Even if you consider it a part of our human experience, it is the part we would most like to skip. One of the most frequent healing desires is to reduce or eliminate pain and suffering. Healing keeps bringing us back to what does wholeness look like?
No one tends to think wholeness looks like genetic disability unless you are a person who has lived into a disability identity. And not everyone with a genetic disability adopts a positive disability identity. Many people spend their whole lives wishing to be something different; something without the inconvenience and limitation of their disability; something without the physical, psychological and emotional pain; something with more ability and more social acceptance. So, what do we do with the emerging technology to allow these people to heal and return to their vision of wholeness? Who decides what is whole and when is the decision made and who decides how to use the technology? These ethical issues not being talked about put us on the slippery slope of a concept that is not new but takes on new life in this brave new world: Eugenics.
Eugenics was popular in the United States in the 1900’s. If you aren’t familiar with the word, here is an online definition: “the study of how to arrange reproduction within a human population to increase the occurrence of heritable characteristics regarded as desirable. Developed largely by Sir Francis Galton as a method of improving the human race, eugenics was increasingly discredited as unscientific and racially biased during the 20th century, especially after the adoption of its doctrines by the Nazis in order to justify their treatment of Jews, disabled people, and other minority groups.” Now the Nazis got in trouble because their manipulation of reproduction was to simply eliminate people. In the United States, the more benign version of eugenics was to involuntarily sterilize individuals with undesirable characteristics. In 1927, the Supreme Court sanctioned involuntary sterilization with a majority decision (written by Oliver Wendell Holmes) in Buck vs Bell that reads in part, “It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.” Lest you think this is ancient history, we might note that the last legally forced sterilization occurred in 1981 in Oregon. Enforcement became state by state with a cascade of repeals in more recent years but the Supreme Court decision has never been overtly overturned. Let that sink in.
Who makes the decisions in Eugenics? It is NOT the individual! It is parents, medical people and social bias who establish who is fit to reproduce. So let’s apply this movement to the CRISPR technology. Many genetic conditions have established patterns of inheritance going forward but first appear in families through an unpredictable occurrence of “spontaneous mutation” of the gene. Parents want the best for their children so most of the decisions will fall to individuals who have no experience of the difference being eliminated or genetically engineered out. In communities with a disability identity, like the deaf or dwarf community, we could also feasibly see disabled parents denied the ability to refuse genetic engineering to heal their child into the wholeness viewed by others. The views of disabled parents are often discounted or ignored. Since disability is so obviously not wholeness in society’s general view, let’s consider LGBTQ. Let’s assume science discovers genetic components to gender identity and sexual orientation, which can then be genetically engineered away. Would a parent choose to have their child LGBTQ or would they choose to heal the child? Of course, we still have the issue of race. Nazis gave Eugenics a bad name with their extreme behavior yet one of the issues facing our nation today remains the belief (by maybe more than we estimate) in a master race. What if a single master race was a physical possibility? Would we eliminate the differences in our human expression if we could? Would that really be healing?
This seems like science fiction. I am guessing most of you think I have just gone too far. I really intend this to be a cautionary note to generate conversation. My concern is being too far down the slippery slope before we discern the need to make a course correction that is then out of reach.
What are the consequences if we shift our focus in the disability community from accommodation and acceptance to elimination of genetic conditions? With increasing economic disparity, who has access to the technology and what happens to those who do not have access? What happens to those with acquired or non-genetic disabilities? Can we trust our social and governmental structures to be able to engage in ethical discussions and decision making? Our history is not great on that. Look at discussions and criteria right now being used in algorithms for distribution of limited ventilators if the need arises. Look at the somewhat cavalier attitude from our nation’s leader about the ravages of COVID, based on the highest incidence being elderly, minorities and those with disabilities. Many continue to consider these acceptable losses in the interest of the economy.
I know this is long and I appreciate those who read to the end. For me, spirituality is not useful if it is not applied to daily living. With power comes responsibility. I am challenged to contemplate both my access to a spiritual wholeness and how to use that access for the highest and best. If I see myself as part of a greater whole, what is the highest for our wholeness? If humanity was designed for diversity, as indicated by our genetics, is it our destiny to eliminate that diversity, substituting human will for divine design? Or was diversity manifesting a human flaw and not divine design? Is Oneness sameness? What exactly is healing and what does spiritual wholeness look like in human expression? I invite you to examine your own beliefs and stay aware of where humanity is heading.
When you begin a new thing, you really have no idea the direction it will take. Whether it is a new relationship or job or writing adventure, life happens. It’s been over a year since Unity Magazine published my article titled “Radical Wholeness”. The intention, at the time, was to challenge my own faith tradition’s theological approach to healing, specifically as it relates to those with disabilities and the language used by some of our most revered writers. My aim was to nudge ministers and spiritual leaders into examining their own theology and language around healing and disability and also, to provide a safe space for those with disabilities to access Unity’s empowering messages. I was excited about the possibilities. I got a couple encouraging responses from individuals with disabilities about a need for this. I got very little response from ministers. Undaunted, I began a blog. I was doing full time ministry so I didn’t have as much time as I wanted to write but I pushed on. The blog was linked to a Facebook page, where I also featured articles about individuals with disabilities and their accomplishments and perspectives. The Facebook page is a place to gain access to the perspectives of people who identify as disabled and just don’t give that word the negative connotation we have become indoctrinated with. Just as I was getting ready to retire and find more time, the pandemic hit. Ministry was overwhelming. Then came the deaths of Ahmaud Arbrey and George Floyd and the focus in the arenas of oppression were focused on Black Lives Matter. Not arguing the appropriateness of that focus and our need for changes to eliminate systemic racism. Just more life happening. And certainly there is inter-sectionality between Black lives, People Of Color (POC) and Disability.
It’s the end of September and Radical Wholeness is more than a year old. I’m not sure ministers and spiritual leaders feel compelled to examine their beliefs around disability because honestly, who wants to think they have limiting beliefs around groups of people when they claim to be spiritual leaders? Right now, many who are not Black are overwhelmed by confronting their complicity in systemic racism. The reach of Racial Wholeness to people with disabilities does not seem to be very broad yet. Honestly, I am finding our teachings haven’t always felt welcoming to people with disabilities so we don’t have as many individuals identifying with disabilities in those who follow Unity messages. I have also found, in other disability forums, people with disabilities have become so accustomed to “making do” with a world not designed for them, they often don’t confront or examine the ways their faith traditions discount them or exclude them. Although I have come to rely on spiritual practice to sustain me in social justice work, I understand those who feel differently. And we all use those parts of a spiritual practice that work for us and discard the rest, without a lot of reflection or searching for a different path. I am not saying that is invalid as a spiritual practice. It is just a new nuance in finding Radical Wholeness’ audience.
While I have been disappointed in the response of what I thought were my target audiences, a surprise audience has surfaced. The core of Radical Wholeness is the idea that each one of us is whole and complete in our spiritual nature, our spiritual or higher self, AND the idea that there is not a singular and superior way our spiritual nature out-pictures in our humanity.
Initially, this was presented as humans who were blind or deaf or dwarf were just as valid a picture of spiritual wholeness as humans who were tall and able-bodied. The surprise was that many people who do not identify with disabilities do see their humanity as broken and less than whole. They resonated with the idea that what they viewed as their brokenness did not disqualify them from being an expression of spiritual wholeness. Or maybe it was a rebellion against being judged as broken and having internalized that message. Still, people who did not identify with disabilities liked the Radical Wholeness message. They liked exploring there is not a singular destination for healing and others should not presume to know the healing needed or taking place in any of us. I have some indication they hear the message of Radical Wholeness as relevant to their lives.
So I will keep writing for Radical Wholeness. I truly hope you will share the posts and maybe what you like about Radical Wholeness. Whether it challenges you to examine beliefs; whether it reveals your own wholeness and inspires you to live into your potential, no matter what limitations appear in the physical world; whether it connects you to others you did not see a commonality with—whatever draws you into this world of Radical Wholeness, WELCOME! We are all so magnificent and we all have ways we under-value ourselves. Perhaps the only healing we all seek is to know our divinity and claim that divine expression as who we are right this moment. Whatever we have come to believe or are still being told about our “differences” and the ways we do not fit the “average” mold, that misinformation has nothing to do with the possibilities available for us to live into. May we all find the truth of Radical Wholeness is relevant to our lives.
Photo caption: A silver pig with wings reflected in a silver edged mirror
I am a whole and complete expression of Divine Life
For months now, everything in my life has taken a backseat to one thing. We like to think our lives are driven by a sense of purpose, by a pursuit of our passion or manifesting our dreams. Yet from time to time none of those things are driving our lives—it is something different and usually, hopefully, temporary. You might guess my driver has been COVID 19 or even Black Lives Matter but you would be wrong. For months everything has been driven by THE MOVE. COVID 19 has been experienced in the context of how it affected THE MOVE (and it did in many ways). As a social justice advocate, I’ve tried to eek out moments for Black Lives Matter self-education, reflection and advocacy around the time consumed by THE MOVE.
Just to be clear, THE MOVE wasn’t even just a single faceted issue. In a lapse of planning or thinking things through, I moved out of church ministry after 11 years; which required I move all my books and things out of my church office; while implementing moving my insurance to Medicare; while moving my income to Social Security and retirement; while finding an apartment and moving my residence across the country IN THE MIDDLE OF A PANDEMIC. Yes, the capitalization is for emphasis. Because honestly, I am yelling in my head! As if the chaos in the outer world beyond my doorstep weren’t enough, I have dumped my life out on the floor, tried to sort through it and gather it back up in some new order. That process is not going as smoothly as you might hope. Still, it is going.
It is a bit ironic that this beginning of September happens to be the fourth anniversary of another time in my life when something unusual was the driver. In 2016, from January to September and then some, healing was the only focus I had. I managed to keep working to pay the bills but otherwise, I let go of everything that wasn’t strictly related to my health and healing. In some ways, I am still putting things back in order from that journey. I learned new priorities and the importance of self-care on that healing path. I am curious exactly what I will keep from THE MOVE experience. I’m not sure I can really discern what I’m learning, yet I can feel a shift happening.
But at some point, we take back conscious control of driving our lives and look at what is in the backseat. I look back there and notice the priorities I cherish when I allow them to direct my daily activities. I notice I’ve not spent much time pursuing my passion (like writing about the intersectionality of spirituality and disability or the way BLM impacts that intersectionality) or manifesting my dreams (like making Radical Wholeness a vibrant ministry online). I become aware of how the details and minutia of THE MOVE have made self-care secondary to the list of things to do. So today I put writing for Radical Wholeness on the list of things to do. I made self-care and passion a priority. It feels good. It’s not that I didn’t have other stuff to do, I consciously took back control, choosing my life activities in alignment with my passion.
Sometimes I feel like taking control of my life activities is not a choice but I know it always is. I wake up to my power. I decide it is time to stop sleepwalking through life. I invite you to touch that innate wholeness within you and draw strength and courage from it. Just take a moment to breathe. If you feel that something other than conscious choice has been driving your life lately, look and see what is in the backseat. Give yourself space to explore what activity you might engage in if purpose and passion and creativity were priorities in your activities today. Then DO THAT activity! See, I’m yelling again. It’s important. If pain or healing or work or grief or survival seems to have been driving your activities, draw strength from your wholeness, still untouched and undiminished by outer conditions, and choose a simple action. For me, even the smallest action aligned with purpose, passion and creativity affirms my innate divinity and renews my faith in wholeness as my true nature.
Image description: narrow view of the rear window of a car, a cream colored straw fedora with black and white patterned band on the ledge and the gray, rear headrests of the back seat showing.
Life has occupied my time and my blog has been neglected. In January I was burning to write a blog: I Am Not A Burden. I had announced my pending retirement from full-time church ministry. There wasn’t really time for blogging. Then the pandemic hit. It laid bare the ugliness of able-ism and I Am Not A Burden seemed even more important, but now I was doing church, fully online and pretty much alone. I couldn’t take on more. Then the week before my final service, an unarmed black man named George Floyd died under the knee of a white police officer. Black lives matter. Wholeness has to address the whole person.
Radical Wholeness stands for the idea that as spiritual beings in a human body experience, our divinity expresses perfectly in each physical expression. It doesn’t matter how the outside world judges our human form; we are an expression of spiritual wholeness. In theory, a lot of people agree with me. In practice we get a different story. In theory, it should be easy to be ourselves. Our humanity comes with a cadre of characteristics including skin color, hair texture, sexuality, gender identification, physical and mental capacities, size, shape and then there is our quirky personalities. Infants come into the world ready to just be! As long as we feed them, change them, and love them, they can tackle the world. The difficult part of being me is being me with the endless noise of a world telling me what is wrong with being me and the me I really should be aiming for. Most of us end up not embracing parts of our humanity based on the advice from the world around us. Whether the advice comes from parents, teachers, peers, media—doesn’t matter. We decide we are too—small, large, loud, shy, dumb, smart, gay, macho, girly—and we make ourselves try to fit in. For some of us, that is impossible. We end up disowning and disliking parts of ourselves and frankly, that separation is supported by media and often church. We also are conditioned to judge how other people are doing at being themselves. We judge the aspects of their humanity based on our conditioning. We all have bias. To say we don’t have bias is simply to deny the reality and blind our self-awareness. If you want to check out your bias, Harvard Project Implicit: https://implicit.harvard.edu/implicit/takeatest.html
I didn’t like the results I got. I had bias I didn’t agree with. I was working on it! I guess I wasn’t there yet. Guess what other bias showed up? I valued people with disabilities. They didn’t see that every day in test results! And it gave some credibility to the testing. Here’s the thing about our human characteristics; if we are in a minority being oppressed, our oppressed characteristic seems to come to the forefront of our awareness. And with that focus, comes some blinders to our privilege in other areas. Every characteristic in our humanity adds a layer to our experience. Our personal view of the hierarchy of characteristics may try to minimize our privileged characteristics.
I am a white, cis-gendered, heterosexual female, with specific disabilities of dwarfism, mild hearing loss and mobility issues. I do not know the experience of having a disability and being BIPOC (Black, Indigenous, People Of Color). I don’t know the experience of having a disability and being transgendered or being LGBTQ+. I do understand that my experience of disability is different than that of others who have other characteristics. I understand that the way different racial groups treat disability and LGBTQ+ groups treat disability is not the same as I may experience disability.
I first remember encountering what I came to recognize as racism when I was eight years old. I spent ten days at a University Medical Center—having my dwarfism poked, tested and experimented with because I am different. In those days (I like to think I’m older than I look but maybe I look that old), parents were not encouraged to visit–so mine didn’t. I made friends with a girl my age who seemed to know a lot more about the hospital routine than I did. We got into mischief in between tests. At the end of my incarceration (it felt like prison), I wanted to visit my new friend. I was told that was not possible. She was black and we (my mother and step-father) didn’t go to that part of town. Well this made no sense to me! I like to believe I have been actively anti-racist after that. I have spoken out against injustice. I have taken risks with my white privilege. I have advocated for equality for race and LGBTQ+ in the spiritual, disability and dwarfism communities. We have made changes happen. And you know what? That stupid Harvard test said I still valued whiteness. It is something I have to be vigilant about. I cannot deny my whiteness, my cis-gender, my heterosexuality. I cannot pretend I have no privilege or bias just because I am oppressed based on gender or disability.
My children are POC. They will experience a prejudice that I do not. They have dwarfism and each of them has other disabilities I don’t. None of us has the exact same experience and the best we can do is listen to others with empathy and act in love.
Radical Wholeness sees the whole of our humanity and celebrates it. Every aspect of our humanity is a different facet for the Radical Wholeness of Spirit to shine through. There is nothing in anyone’s skin color or ethnicity that diminishes the power and wholeness of the Divine within. Disability continues to be an aspect of our humanity that gains the least amount of attention and wields the least amount of political power. Radical Wholeness will continue to be mainly about the intersection of spirituality and disability. In this moment, however, we are all called to witness our racial bias and advocate for justice and equality. We are all called to demand training and equipping law enforcement to serve and protect in a way that honors the humanity of all. We must all vote and be accountable for our justice system. We are called to lift up the Black voices and listen with open hearts for what is ours to do.
Maybe we’ve said this phrase. Maybe we’ve heard this phrase as we pass by someone. I really don’t like the phrase.
“There” is a word of spatial separation. Toddlers learn the difference between “here” and “there”, just as they distinguish “up” from “down”. Here is where I am and there is where I am not. In the spirituality of connection, in the field of oneness, is separation a reality or an illusion our minds make up? Floods and fires and natural disasters happen there, until suddenly it happens here and our perspective changes. Honestly, we like the comfort of the distance there creates. We create separation from things unfamiliar because we fear the experience or condition. Fear drives us apart.
“but for the grace of God” implies an inequitable distribution of grace by the infinitely giving Divine. How could a field of love parcel out grace to some and withhold it from others? I puzzle over how these decisions could be made, even in the limited human understanding speaking the words. If you live with a disability and hear these words spoken by others as we move through life, you have to wonder why grace would be denied you and heaped upon the able-bodied person. What event triggered this distribution decision? Was I bad or was the other person good? What is the measure in this duality? Don’t we all receive grace?
Let’s go to a more basic question: What is grace? Or more specifically, what is God’s grace? It seems Merriam-Webster feels bold enough to venture into the religious waters of definition on this one saying grace is: “unmerited divine assistance given to humans for their regeneration or sanctification; a virtue coming from God or a state of sanctification enjoyed through divine assistance” (from online dictionary https://www.merriam-webster.com/dictionary/grace). The very beginning of the definition blows the merit theory out of the water—unmerited divine assistance. We can’t earn grace! There is no list of good deeds that qualifies us for grace. Some authors hint that humility is a prerequisite for grace but that would be a subtle measure of merit and presumes the arrogant are exempt from grace. All of those terms depend on the duality of judgments made in the intellectual process of our humanity.
Here’s how I view grace: the elastic in the operation of divine principle that is both mysterious and universal. “Elastic”? Elastic gives and makes more room. Who doesn’t put on their stretchy pants when dressing for a big meal? Sometimes it seems that I don’t reap exactly what I sow and I am grateful! I speak the words, “This is killing me” and it doesn’t. There is mystery in spiritual principle that defies the easy exactness of the limits in human understanding. Everyone is subject to divine principle at work and everyone receives grace. What is different is that we all have unique lives, unique needs and lessons and gifts. So, it makes sense that grace shows up differently for each of us. Not that some receive grace and some don’t. Maybe some of us see grace more clearly and express gratitude more easily but I am confident we all receive grace, whatever our religious beliefs are. I don’t pretend to know how grace is activated or how it shows up in the lives of others although I remain confident it appears for everyone. In this way, we are actually connected through grace. What if we are here in this earthly experience to learn there is more strength, more comfort and more power in connection than in separation? Wouldn’t that be ironic? Our human efforts to find safety and comfort in separation are all for naught. Our fear is unnecessary.
Grace is here and grace is there, for me and for you. With my walker, I continue to make my way forward on the unique path unfolding for me. Others race forward on limber legs and others power forward in chairs with and without motors. Grace is equally distributed among us and no one will cross the finish line a moment before or later than it is meant to happen.
Here goes grace, here comes grace. Grace is everywhere!
I’ve been slowly writing this in my head for
weeks! The limitations in my mobility
are still new to me and I remain a bit self-conscious about the speed with
which I traverse any given path. Given the miserable weather we’ve had, I
notice I am just as slow in the pouring rain as I am in the sunshine. I generally lack any speed or gear other than
slow. I chuckle when people holding the door encourage me with, “Take your
time.” I certainly hope they don’t think
this speed is me rushing!
I realize I am self-conscious about my speed because slow is not a prized value in today’s culture. Even personally, as a professional, single mother I prided myself on multi-tasking and disposing of tasks efficiently. It still feels foreign to find myself calculating how many steps and trips it will take to accomplish a simple household task and trying to minimize the walking. Occasionally it is on the tip of my tongue to suggest an outing to my daughter. Then I stop myself. How exactly could I balance myself to play miniature golf? How far would I be able to hike or is there a trail that is accessible.
As I acclimate myself to going slow, I’ve been reflecting on slow as a quality we value or discount. Mostly, in this country, we discount slow. Some cultures enjoy leisurely meals, while we have elevated “fast food” to new heights. There is a lane on the highway if you want to drive slow (or even the speed limit) and you leave your lane at your own peril. We have traded “slow cookers” for “insta-pots”. As parents, we lament the speed with which our toddlers and teenagers dress themselves. “Hurry up” we urge them. Then suddenly they are leaving for life on their own and we are not in such a hurry.
Most of us have little patience with slow. When we label intellectual challenges as “slow
learners” it is not a badge of courage for their perseverance but a disdain for
their need for repetition and support. We
avoid events in which we might have to suspend our usual haste and wait with
those whose disability slows their pace of ordinary activities like walking,
eating or speaking.
Slow is also a comparative term. Slow is a measure of speed compared to the
speed of something else. Comparisons
lead to fear and stifle our creativity.
In comparison, we often find ourselves lacking and then our ego mind has
to strategize how to survive. One gift
of my earliest introduction to spirituality was that it was grounded in an
indigenous culture with a lack of comparison.
I knew Great Spirit was in the chipmunk and the bear; in the turtle and
the eagle; without one being superior to the other. Different but not better than or worse than
is not how the Western world usually does comparisons. I learned this when I went to school.
I wasn’t picked for teams and I couldn’t keep up at
recess or on field trips. I didn’t get asked to go to dances and often wasn’t
invited to parties. The message I
received was that slow and small were less than and definitely not preferred in
peer groups. In a culture that measures speed in gigs and nanoseconds, slow has
no value.
Spirituality, like nature, has a different rhythm
than humans dictate. The seasons don’t
hurry. The seed takes as long as it
takes to sprout. A leaf lets go
gradually, not anxious or fearful about the next phase. Awakenings arrive
slowly or in flashes but there is no skill or force that can determine
that. Spirit is patient and allows us as
much time as we need to learn our lessons, presenting them again and again
until we master the insight. Grace gives
us the benefit of unearned blessings and spares us the fruit of our own folly
without a measure of time. Time
disappears in the immersion of oneself in the silence of Oneness. There is no slow nor fast—just being.
For “animal medicine” or the wisdom that comes from our animal brothers and sisters I reflected on sloth and tortoise. Tortoise is more familiar and I know they are different than turtles but the medicine card I could find says turtle. I found Tortoise symbolizes longevity, endurance, and being grounded. Tortoise is ancient and wise, never needing to rush or worry. It knows that it always has everything it needs within its shell. Sloth is a newer symbol, not originally found in this country. Sloth symbolizes relaxation, conservation, grounded-ness, and patience. Sloth is a conservation master and uses only the needed amount of energy for any given activity. Wow, that is exactly how I calculate my activities! Both are grounded and patient. What extraordinary qualities to possess in this hurry up world!
I go slow. It is with pride and not shame or embarrassment I claim the value of this quality.
Whether we are talking about psychology or
spirituality or healing or some combination, the word “broken” or “brokenness”
seems to come up. The online dictionary
uses descriptions like “damaged”, “no longer in one piece”, and “no longer in
working order”. “Broken” is a word
people with disabilities hear in phrases applied to them like “damaged goods”
and “non-functional” and “unable to work”.
I think everyone probably considers themselves broken somewhere along
the path of life. Whether it happens
with a loss of a relationship and we have a broken heart; the loss of a job and
we have a broken spirit; or an injury and we have a broken leg, everyone
understands the idea of being broken. And who among us has not heard and
sometimes believed our brokenness arose from some bad action by ourselves in a
current or previous incarnation or by our parents or ancestors. Some call the bad actions sin, some call it
erroneous thoughts and some call it karma. It is an uncomfortable
interpretation found in many religious traditions. In the ninth chapter of John,
the disciples question Jesus about a man’s blindness: “ ‘Rabbi, who sinned,
this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this
man nor his parents sinned; he was born blind so that God’s works might be
revealed in him.’ ”
I have been reflecting on the idea of brokenness,
staring at a web of fault lines tea stain reveals in a cup from my grandmother.
Decades of tea held to the lips of women in my family are the history of this
cup. I looked at my hand holding the cup
and noticed the web of lines created by my veins. Veins and arteries (usually not visible),
large and small, carry blood throughout our bodies. Veins are the tracks of how life runs through
my body. And it occurred to me that much
of what others, or even I, consider brokenness is simply how life runs through
me.
I can break a bone and it does not mean my soul, the
essence of who I am is broken. I believe
every part of my humanity can be broken, not working, or flawed and there is a
divine part of me that is as whole as the moment it was created in the mind of
the Creator. I can be missing limbs and have my brain re-wired and need
assistance with basic functions and still, within my being-ness, I am
whole. What we call broken is simply how
life runs through me and according to my beliefs (which you may or may not
share) how life runs through me is how God’s work is revealed in this
lifetime.
It’s easy to gather a list of things in my life I have thought of as part of my brokenness: my dwarfism, a dysfunctional family and early abuse, the death of my father as a child and the death of my child as a young parent, health challenges and depression. It doesn’t seem to matter if the condition or event or thing was a part of how I was born or came along as I made my way through life. As I breathe into reflecting on how each of these changes me and shapes who I am in the world and as I remember I am made with the same divine imprint as everyone else, I see the tracks of how life runs uniquely through me. I am still whole with a Radical Wholeness that is untouched by any condition of my humanity or my human experience. I may not work the way others believe I should or could and yet, life continues to breathe me into existence. I continue the work I perceive is mine to do in the world, including this exploration of the intersection of spirituality and disability and the radical idea of wholeness within each of us. I continue to tap into that wholeness to heal through the physical and emotional conditions which make me feel less than who I came here to be. Sometimes that healing turns out the way I imagined it would and sometimes healing leads me to an entirely new place in life.
Temple Grandin spoke in Philadelphia this year at a conference on Autism. She was quoted as saying we need all the creativity people bring, including the different way the brain works in people labelled with autism. There are different ways of hearing and seeing and thinking and expressing and communicating and when you put them all together it creates a magnificent wholeness each one of us is a part of. Life runs through us fitting together a million pieces that might appear broken until you have a stained glass window or a Tiffany lamp. It is a very limited view of one tiny piece that sees different as nonfunctional. Perhaps if we all gave less attention to judging brokenness in ourselves and others, we would have more time to focus on the wholeness of life working through us. Without trying to measure success or productivity, we could appreciate the love and peace and creativity each one brings to the world as life runs through them. Perhaps we would have a new appreciation of the powerful healings unfolding around us every day. We might even glimpse healing pieces being fit together within us.
The dictionary has one more definition of broken that is a separate line: having given up all hope. Perhaps this kind of broken is the most challenging and yet, these situations give me the most evidence for an innate Radical Wholeness waiting to be drawn upon. Albert Einstein is attributed the quote: “Adversity introduces a man to himself”. When the outer world seems to fail us we are forced to turn within. There we discover resources we might have been unaware of. We discover that essence of wholeness that can sustain us through the time of darkness, into a new version of ourselves, into a healing transformation of how we see ourselves or others. It’s not a magic potion or spell or anything someone can give us—it is our own Radical Wholeness to discover and utilize as life runs through us.
Do you see yourself as broken or do you see the tracks of life running through you? Perhaps more importantly, can you touch the Radical Wholeness that is within you? Do you believe the Radical Wholeness within you is doing Its spiritual work through you? Tap into your Radical Wholeness and allow divine life to run through you.
How life runs through me does not alter the Radical Wholeness within. Photo caption: image of hand with vein lines holding a tea cup with roses
Scientific research confirms that the words we use, the thoughts and beliefs we hold, and our emotional health have an impact on our physical well being. We are encouraged to use positive words as we talk about ourselves and our life and stay alert to the emotional tides stirring in us. The interesting thing is, words carry the meaning, emotion and energy we give them. The exact same words carry a positive or negative energy, depending on the speaker.
In this month of June, African-Americans celebrate Juneteenth; LGBTQ folks celebrate in Pride parades and festivals; and last Sunday the disability community celebrated the first Tony award given Ali Stroker, an actress in a wheelchair. These celebrations are associated with conflicts, sacrifices and struggles. June 19, 1865 was the declaration of the freedom of slaves in Texas and the emancipation of slaves in most of the confederate states. This year marks the 50th anniversary of the riots between police and the LGBTQ community at Stonewall in New York. The Tony is the culmination of not only the efforts of one actress but the many disabled performers before her denied access to the stage and the roles and the recognition deserved.
For many generations, white people in the United States have told others that the color of their skin made them less than and using the privilege of white skin, they took action to limit the social, economic and political power people of color could access. For many generations, straight people in the United States have told Lesbian, Gay, Bi-sexual, Transgender and Queer people that they were flawed and to act upon their natural sexuality was shameful. Straight people using their privilege, took action to limit the social, economic and political power LGBTQ people could access and tried to use religion to deny even the spirituality of this segment of our population. For many generations, able-bodied people in the United States have told people with various obvious and not obvious disabilities they were broken and less valuable. Looking at people with disabilities with pity or at best compassion, able-bodied people were grateful not to be in those circumstances and then used their privilege to construct barriers that limit the social, economic, and political power and even physical access of people with disabilities.
Black Power, Gay Pride and Disability Pride would have seemed impossible concepts a hundred years ago. Calling someone black, gay or disabled for many years has carried a negative energy. When the energy of words describing our humanity is used so negatively so often in every arena of our lives, it takes intention and effort to shift that energy in our own consciousness. I believe it has to start within the consciousness of those impacted first. I have to make peace with who I am. Allies who are not impacted and therefore hold power denied the marginalized and who hold positive energy around marginalized human characteristics are important partners in social and political change. Still, so long as I continue to buy into the negative energy of descriptions of my own humanity, it will adversely impact my dreams, my belief about my potential and even my physical and emotional health. I have to believe in myself before I can truly feel supported by others.
It has been interesting for me to explore my bias around marginalized characteristics. I consider myself a consciously aware Ally and some recent testing reminded me to work at staying aware of subtle ways I may continue to be influenced by early and repeated conditioning from media, peers and the social/work environment. “Project Implicit” is a Harvard project and testing site that has been developed to probe for our bias in gender, race, sexual orientation, abilities and more. Testing revealed bias in favor of whites, despite considering myself a strong ally for racial equality. Testing also revealed a belief in male dominance, despite being a strong female professional. Interestingly, testing revealed I have a bias in favor of disability. Pretty much all of these results surprised me. At first I wanted to challenge the accuracy of the bias revealed which did not align with my perceptions of myself. Then came the news I had a positive bias around disability. It is more challenging to accept some results and not others.
One thing the testing indicated to me was simply that for me, disability does not carry the negative energy it might for people intent on oppressing or discounting individuals with disability. Just as African-Americans claim that part of their humanity with positive energy and LGBTQ claim that part of their humanity with positive energy, my disability tribe is coming into the power and positive energy of claiming that part of our humanity. Disability is something that distinguishes us but does not diminish us. We are making peace with our humanity. Other people wonder why I would be willing to identify as disabled. I guess the confusion arises from their negative bias around the characteristic. Unlike their perception, when I identify as disabled I am not considering myself broken, limited or less than anyone else. Using disabled as a positive word seems outside the realm of possibility for many. What may be most important is the ability of individuals impacted by disability to perceive that aspect of their humanity positively. What other people think of me is not my business. What I think of me directly impacts my health, wealth and well-being.
Ali Stroker’s acceptance speech at the Tony awards initially focused on her role as a pioneer. “This award is for every kid who is watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena — you are,” she said. It is easy to say, “See she said ‘limitation or challenge’. That’s a negative self-image.” For me, she is using words in a way familiar to the audience and then redefining them by the way she lives. “You say I have a disability, a limitation and a challenge as a negative and yet here I am using my gifts, shining my light and being a whole person.” That is Radical Wholeness expressing without limits.
Radical Wholeness tells me the spiritual essence within me is exactly as powerful, sacred and whole as that essence in each and every person. To view my humanity, this temporary vessel for my Radical Wholeness, as something negative is what limits the radiance of my divine light. Not the vessel, not the opinion of others, but my own negativity restrains the potential within me yearning to express. Disability is a positive word for radical wholeness expressing.
Radical Wholeness 