Pushing Forward Against the Arm of Paternalism

This past Monday, I was heading to Baltimore to present at the biennial Leaders Assembly for one of my favorite clients, the Foundation for Jewish Camp.
Heading downstairs in my apartment building, I entered the elevator where another woman was standing near the button panel. Since I didn’t want to awkwardly bump her while reaching for the button panel, I asked her to press the lobby button for me. She did.

I cannot see elevator lights, so instead I listen to the beeps to determine which floor I am on. I entered on the fourth floor, so after the elevator descended and I heard it beep three times, I knew I was on the first (lobby) floor. Having lived in my current building for ten months, I had done this elevator ride hundreds of times, and was confident in my travels.

The door opened, but my elevator companion said “no, this isn’t the lobby.”
“Yes it is,” I countered, and walked toward the door.
“No, not the lobby,” she said again. She then tried to block my exit with her arm. Instinct took over, and I pushed forward as hard as I could. Luckily the interfering arm gave way. I stepped out of the elevator into the lobby. My companion continued down to the garage.

I am unsure why my elevator companion was so confident that I was exiting in the wrong place; perhaps there was a language barrier, perhaps the visual indicators from the elevator malfunctioned, or perhaps she was just distracted. In any case, she and I had different perceptions of the same reality. As it turned out, my perception was correct and hers was not. Rather than simply accepting this discrepancy, though, she felt it necessary to try to correct my “error” in a direct physical way. I couldn’t help but wonder if the same thing would have happened if I did not have a visible disability.

I traveled to Baltimore and got ready for my workshop, still feeling unsettled. Of course, I was rattled by the physical confrontation and the fear of being trapped in the elevator. I felt frustrated to have had my judgment and competence questioned. And, I was alarmed by my own internalized sense of doubt. When the elevator door first opened, part of me wondered if I really wasn’t in the lobby after all, and when I pushed out of the elevator, I half expected to be on the wrong floor. There was a part of me that wanted to acquiesce to her simply because she could see and I could not. Even in my own apartment building, where navigating is automatic and mindless, I doubted my own judgment.

Those of us who were born disabled find ourselves immersed in a world of people who sense, think, feel, speak, or move differently than we do. From the earliest age, we are taught to obey figures of authority who interact with the world in this different way. All too often, we are subjected to well-meaning interventions meant to convert our ways of sensing, thinking, feeling, speaking or moving into a more typical manner. Explicitly and implicitly, we learn that our ways of interacting aren’t as good or as right as the ways the rest of the world interacts. And, when a discrepancy of perception or judgment occurs, we may tend to follow that of the nondisabled person over our own. If we push forward, asserting the soundness of our judgment and our desire to move ahead, sometimes the well-meaning, but oppressive, arm comes up to stop us in our tracks. If this happens often enough, the natural response is just to stay put and stop pushing.

In Baltimore, I spoke with a small group of camp leaders about strategies to build an inclusive camper culture. I began by introducing my own story of being excluded from a Jewish summer camp. Then, we discussed tough situations involving reactions to disabilities. The workshop participants discussed how they allowed campers with disabilities to tell their own stories and reframe their peers’ questions about differences in positive terms. We talked about universal design and strategic staffing arrangements to support all campers without drawing extra attention to a camper with a disability. We talked about the balance between inclusion and disability community, and how we can foster disability pride in young people while still giving them the same opportunities as their peers without disabilities.

I rode home and grabbed the elevator up to my apartment (alone this time). By then, I was feeling a bit more optimistic about the future of my brothers and sisters with disabilities. At least some members of our society recognize the positive value of differences. These allies enable others to tell their own stories and trust their own perceptions without imposing nondisabled norms and expectations on them. Perhaps we will raise a new generation of disabled people who rarely, if ever, doubt their own convictions in the face of nondisabled challenge. Inevitably, young people with disabilities will encounter the interfering arms of others attempting to redirect their dreams. But I am confident that we can give them the strength to gently, but firmly, push their way past.

A Letter to Sixteen-year-old Me (and disabled teens everywhere)

Sent: December 15, 2017
Received: March 15, 2001

Dear me,

I know you’ve been struggling lately. Because it’s all so unfair.
It’s not fair that everyone seems to treat you either like you’re 6, or like you’re 60. You just want to be 16.
You’re tired of people assuming you can’t do anything because you’re blind.
You’re tired of people assuming you’re amazing because you do normal things and you’re blind.
You’re tired of being told that if you want to be accepted, you have to dress and look a certain way.
It’s not fair that everyone in your class can drive but you have to wait for your parents to drive you everywhere, because you can’t drive and they won’t let you ride the bus
You’re going to scream if one more person grabs you or touches you without so much as saying hello. But, if you do scream, you’ll get in trouble for being rude, because “they were just trying to help.”
You want to be proud of who you are. But everyone thinks that the way you were born is wrong.
And, deep down, you start to wonder if everyone else is right. If you should just accept your limitations and stop trying to be their equal.

You have every right to be angry. Because no, it’s not fair.
You were born into a world that isn’t built for you.
A world where some people would rather be dead than blind.
A world where disabled teens only recently started going to regular high schools, and many disabled adults can’t find jobs, affordable housing, or healthcare.
A world where you know more than most adults about your own disability, even Mom and Dad and Grandma.

You know more about your own capacities and limits than anybody else does. Don’t forget that.
You are a whole, good, competent person just the way you are.
You aren’t special, amazing or inspirational. You’re just a teenager trying to find your way in a broken world.
And you aren’t alone.
You haven’t met most of them yet. But there are millions of disabled people fighting the same battles with you.
A whole movement that started before you were born;
Older disabled people who will show you the way,
Your peers who really understand what it’s like day to day,
And the next generation, whom you’ll mentor someday.
Through the community, you’ll transform your anger into action.

In just two years, you’ll get the freedom you crave.
Living on a college campus, building your own life
And making your own mistakes.
You’ll fall down, get up again,
And with each fall you’ll gain clarity and confidence.
You’ll get to choose where to live, and eventually you’ll move somewhere where driving is optional.
You’ll get to choose friends who include you and coworkers who respect you.
You’ll still have those frustrating “blind days.” But they’ll get fewer and more fleeting.

Oh, and one more thing:
About that boy you’ve liked since you were twelve:
Well …. He’s not that in to you.
In a few months he’ll tell you he loves you like a sister. And he does.
You won’t be surprised. But it’ll still sting.
Because you want something more than a friend or a brother.
Your body’s primed for passion, just as nature intended. Some days, it’s all you can think about.
But none of the boys see you that way.

You really want a guy who’ll be your best friend, your partner, and your lover all at once.
And, it’ll happen, I swear.
You’ll have to wait a while, and this won’t be the last time you get your heart broken.
But you’ll meet someone who’ll love you just as much as you love him,
Who’ll love your entire being,
And he’ll love you with your disability, not in spite of it.
You probably don’t believe me, but I’m dead serious. I even sent a picture of your wedding rings to prove it.
(Oh and I forgot to mention-you’ll get PhDs together).
photo of our two wedding rings beside our two Ph.D. diplomas

And speaking of passion, don’t ever lose that eagerness you have, even when you get old.
Don’t lose your sense of adventure, your curiosity, your humor, or your zeal for justice.
Because even though it doesn’t feel like it now,
There’s a lot of excitement ahead of you,
And every day is a gift.

Believe me, it’ll all turn out.
Just don’t believe the prom industry:
Have no fear, these are nowhere near the best years of your life

With love,

On Curing Disability, Part 1

In the medical community and in popular culture, it is often assumed that most disabled people wish to be “cured” or “healed.” Along with this assumption, it is assumed that preventing or curing disabling conditions would benefit society as a whole. Billions of dollars are spent every year on biomedical research intended to identify and remediate the causes of disability, while public health campaigns urge us to take actions (like getting our vision and hearing checked) in the name of preventing disability. Just last week, scientists announced the first successful attempt to perform genetic treatment on human embryos, modifying the embryonic DNA so that they could avoid inheriting a fatal heart condition. This breakthrough renews questions about the benefits and pitfalls of curing genetic disabilities. Is medical treatment the best thing for people with disabilities? For society as a whole?

I first became interested in this topic as a college undergraduate when I was majoring in Biology and Society, a biology degree program that incorporated study of the ethical aspects of emerging biotechnologies. Early in my studies, I noticed that disabled voices were absent from research and policy discussions, or at least from the ones I was reading about. The literature I was reading seemed to start with the assumption that curing disability was always a good thing. As it turns out, views about treatment in the disability community are much more diverse and complicated than that. In this week’s post, I want to discuss some varying opinions about disability prevention and treatment in the “ideal case”-how people feel about the prospect of having their disability completely and cleanly “cured.” Next week, I will talk about the realities of current medical treatments, and the unexpected pitfalls of treatments that only partially work.

At the end of my undergrad program, I surveyed about 300 legally blind adults. I asked them how likely or unlikely they would be to take a “magic pill” that would completely and instantly give them full sight if it were available. Although most of the participants said they would take this pill, about 20% said they would be at least slightly unlikely to take the pill. I found that people who had been blind for most or all of their lives, as well as people who both felt good about their blindness and who felt a strong connection to the blind community, expressed the least interest in the magic pill. When invited to comment, these individuals said things like “I have been blind all my life and it is part of me” or “I think blindness makes me who I am. Why would I want to change that?” These individuals simply didn’t see a compelling reason for treatment. Several participants also noted concerns about the challenges of “going sighted” and learning a whole new skill set. Among the participants who enthusiastically said they would be “very likely” to take the magic pill, reasons included the possibility of being able to drive or read print unassisted.

A partial treatment for deafness, the cochlear implant, already exists and has been on the market for three decades. But it hasn’t received a unanimous embrace from the deaf community. Some deaf adults, and parents of deaf children, have been satisfied with the results. Others, particularly those who identify with Deaf culture (note the capital D used to describe the culture rather than the lack of hearing), worry that widespread cochlear implant use could weaken Deaf culture, particularly by reducing the use of sign languages. Like the minority of blind participants in my study, these Deaf individuals do not see themselves, or Deaf children, as broken or in need of healing. Instead they see themselves and their Deaf brothers and sisters as carrying a proud heritage. In fact, the American Sign Language sign for a cochlear implant is sometimes made to look like the sign for a vampire, with two fingers behind the ear in a stabbing motion-not exactly a sign of appreciation for the technology.
ASL sign for a cochlear implant

In its position statement, the National Association of the Deaf emphasizes that a cochlear implant is “not a cure for deafness,” a comment highlighting its imperfect efficacy. As we will discuss next week, an imperfect treatment can sometimes make things harder than no treatment at all.

As one more example, the neurodiversity movement emphasizes accepting people with neurological differences instead of trying to remove those differences. In a position statement, the Autistic Self-Advocacy Network writes:

The disability rights perspective within the Autistic community is represented in the neurodiversity movement, which promotes social acceptance of neurological difference as part of the broad landscape of human diversity and seeks to bring about a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone.

Importantly, this statement implies that neurodiversity isn’t just “not a bad thing”; it’s actually a strength that can benefit society in an accepting social context.

Clearly, then, there is a range of opinions in the disability community regarding the prospect of “curing” disabilities. Many disabled people support disability prevention efforts. But once they become disabled, the idea of having that condition reversed is one fraught with implications for one’s way of life, one’s identity, and one’s community. In addition, any biomedical treatment can bring up a host of religious, political and philosophical issues; for example, a few participants in my study said that they would be open to a treatment for their blindness, as long as it wasn’t derived from embryonic stem cells, which violated their religious convictions. As treatments become more scientifically feasible, we will all grapple with the risks and benefits of particular treatments to choose what is right for us as individuals.

So, what do I think of all this?

First, I fully support medical treatments that can reduce the physical pain associated with many disabilities, because pain is, by definition, an unpleasant experience. I also support medical treatments for conditions that shorten a person’s life expectancy. And, I support innovations to remove the attitudinal, educational and access barriers that are the real causes of disability for people with physical or mental differences. I would love to see the federal funds, currently being spent on genetic research for my eye condition, instead spent to subsidize training for more qualified braille teachers so that all children who cannot effectively read print can learn braille early in their schooling. I would like to see funds diverted from biomedical research to the increased production of power wheelchairs, removal of architectural barriers, and funding of more sign language interpreters and personal care assistants so that people with disabilities can live and work in their communities.

Biodiversity is what allows any species to thrive under changing conditions. For example, genetic diversity among bacteria enables them to survive an antibiotic apocalypse. When we think of human diversity, we often think of differences in skin tone or facial features. But, ability diversity is perhaps the crudest form of human difference, and I don’t think ability diversity is ever really going to disappear. If something ever happens to our global energy supply, or a long-term eclipse strikes the sun, I can imagine it might help our species to have a few million people who are fully adapted to functioning in darkness. I can imagine that people who know how to communicate smoothly over loud noise, or people whose brains are wired for concrete problem-solving, can be a real asset to our species. As Temple Grandin, an autistic livestock breeder and self-advocate, wrote:

What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.

(Temple Grandin, as cited in Baron-Cohen, p. 491).

In the coming decades, medical science will advance, and these conversations will continue. It is imperative that disability self-advocates are front and center in conversations about treating, curing or preventing disabilities. We have the most to gain, and we also have the most to lose.

Legislative Action Alert! Don’t Let Congress Weaken the ADA!

The Americans with Disabilities Act (ADA) was passed in 1990 to protect the civil rights of Americans with disabilities. Among other things, the ADA requires all businesses serving the public to make their facilities and communications accessible and to provide accommodations for particular disability needs. Business owners have had more than 25 years to learn about and implement accessibility requirements. However, disabled people still routinely face numerous access barriers when attempting to utilize goods or services available to the public. As just one example, many Americans with mobility disabilities still live in apartments with steps
Under the ADA, disabled people can file complaints and pursue civil action when they encounter direct or institutional discrimination from a place of business. But a new bill in Congress, H.R. 620, could make it harder for affected individuals to file complaints. It could complicate the process and delay required action by the business, removing incentives to comply with essential civil rights safeguards.
Read about the bill and how you can make your voice heard