Reflections on diversity: Curiosity

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.

Both And

“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.

The yoke and burden of mindfulness

The Yoke and Burden of Mindfulness

“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.

Dialog the false narrative

Dialoging the False Narrative

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

Justice is not a special need

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.

Just a big misunderstanding

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.

The Price of Change

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)

Anything new?

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?

Radical Wholeness and Gratitude

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.

Begin within

Denial, Pride, Truth

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