Fixing vs Healing

Fixing vs Healing

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.

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. 

Reflections on Diversity: A different kind of perfect

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. 

Reflections on diversity: blue jays

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.

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.