Featured

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.

Featured

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.