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Disability, Inclusion and Church

Disability, Inclusion and Church

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.    

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What is wrong with you?

What is wrong with you?

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!  

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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. 

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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.

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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

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Could Disability Be A Positive Word?

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.

Resources

You can test your own bias online at https://implicit.harvard.edu/implicit/selectatest.htm .

For a Unity perspective on Juneteenth read Reverend Jacquelyn Hawkins article http://www.unity.org/resources/articles/why-celebrating-juneteenth-matters-now-more-ever

For Unity’s LGBTQ perspective http://www.unity.org/resources/lgbtq

For more from Ali in her own words https://www.nytimes.com/2019/06/12/theater/ali-stroker-oklahoma-tony.html

Ali Stroker wins the Tony for Featured Actress in a Musial!