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Deaf, Hearing Theater Professionals Collaborate in Musical ‘Stepchild’ [Repost]

“Although ASL and Deaf characters have become increasingly common in theatre, TV and film, it is rare for Deaf talent to be fully included in the development of shows outside of Deaf-run theatre companies. Kori Rushton, Producing Artistic Director at IRT, set out to change that by having a Deaf and hearing person collaborate on each major aspect of the production. Deaf and hearing directors worked together to ensure the production was accessible and engaging for audiences of all abilities, while the Director of Artistic Sign Language sought to convey the power of the lyrics and rhythm of the music in sign and movement.”

Here’s an article about a new inclusive musical theater production. The plot is loosely based on that of Cinderella, but features a deaf protagonist discovering the freedom of sign language, and fighting against oppression. Read what the producers, directors, and actors in this show have discovered about inclusion through this unique project.

Reader’s note: On clicking the link, you may be prompted to sign in; however, signing in is unnecessary. Simply click “continue to site” at the bottom of the page to view the article.

Deaf, Hearing Theater Professionals Collaborate in Musical ‘Stepchild’

How Can Assistive Technology Developers Earn Disabled People’s Trust?

“The best thing non-disabled people can do when inventing or innovating products for disabled folks is to actively seek out and include disabled people at every step of the design and testing process. If they don’t do that, I give them no credibility whatsoever, because clearly they see their job as to fix a problem on their expertise alone, however flawed or lacking their expertise may be.”

I’m in a couple of Facebook groups where someone has been promoting a new “wearable” cane for blind toddlers. Instead of being handheld like the conventional white cane, the device straps onto a child’s waist and blocks the child from running into obstacles.

At first, the concept seemed a bit intriguing. After all, there are times when both blind children and adults could appreciate a hands-free cane alternative.

Unfortunately, though, the rhetoric that the device inventor uses has become a major turnoff for many blind adults, parents of blind children, and cane instructors-the markets that she most needs to impress. Specifically, the device inventor defends her creation by painting a bleak picture of early childhood for blind children, claiming not only that all blind children experience developmental delays, but that no child can use a conventional cane “properly” until the age of 6-despite ample evidence to the contrary. She deflects practical questions about the safety of her device or its applicability in different environments. She uses buzzwords that are not part of the broader blindness vernacular, like “mobility visually impaired.” In short, she seems wholly out of touch with her market.

This may be a somewhat extreme example, but there’s a broader pattern here. Designers, engineers, and students are always coming out with new ideas to make our lives better. But, not all of these ideas are ultimately good ones. Disabled people have certain criteria we use to evaluate new technology concepts and to decide whether or not we want to get on-board as potential customers, testers, or co-designers.

So what distinguishes a technology team that wins our trust from one that doesn’t? I asked the folks on the Disability Wisdom Discussion Group for their ideas. Here are some common themes that emerged:

*Disabled input: The single biggest theme mentioned was that “good” tech teams involve disabled people in the entire design process “from brainstorming on up.” Centering the lived experiences of disabled people can help avoid some of the pitfalls mentioned below. And, involving members of the target user market is the single best way to ensure that there will actually be a real market for the finished product. Tech teams can earn our trust by inviting us into positions of influence and compensating us appropriately for our expertise. By contrast, tech teams that wait to consult us until they need beta testers tend to arouse more suspicion.

*Product fills a real need: We often hear about tech concepts and think, “That already exists” or “That’s a fix for something that isn’t broken.” Sometimes low-tech, mainstream solutions already solve the problem that a new high-tech gadget would solve at ten times the cost. Or, the “problem” might not be a problem to begin with. Good innovations are those that build upon existing solutions and strategies disabled people already use, augmenting their effectiveness or filling gaps that current technologies do not yet fill.

*Language and attitudes: Group members pointed out that we are more likely to trust a technology team who uses respectful, empowering language about disabled people. In contrast, “If the company uses really infantilizing, patronizing, or super-self-congratulatory language to describe their product as the savior of disabled people, I’m immediately turned off.”

*Responsiveness to feedback: Tech teams can earn trust by actively soliciting user feedback and responding promptly to concerns raised. On the other hand, those who “sidestep safety questions and other inquiries like a career politician” will quickly raise red flags.

*Affordability: Many disabled people live near or below the poverty line. Many “niche” assistive technologies are simply priced too high for the average disabled consumer to afford. When a product is priced so high that consumers can only afford it with the assistance of a government agency, the reach of that technology is substantially reduced. On the other hand, technologies that are marketed to the mainstream, not just people with disabilities, can often be made more affordable to the disabled market. For example, the built-in assistive technology on Apple devices is often more affordable than a Windows device running a separate, specialized screen reader or screen magnification.

*Exclusivity vs. inclusivity: Innovations that are part of the mainstream may be more affordable than specialized “exclusive” technology for disabled people, and it also is more attractive by embodying a spirit of inclusion rather than exclusion. For example, instead of designing “special” social networking apps for disabled people, a more acceptable option is to make mainstream social networking apps accessible for all.

“I Know This Is a Personal Question, But…”

A few months ago, I shared a Lyft ride with a blind friend. She was dropped off first. During the ride, we chatted about our jobs, homes, and other common topics of discussion among 30-something professionals.

Our driver was quiet during our chat, but after my friend was dropped off, he asked me, “So…What happened to you and your friend?”

I calmly explained that nothing happened to us, that we are both blind, and that I didn’t know her medical history but in my own case my blindness is genetic. I then went back to my MP3 player.

A few minutes later he asked me if I had any siblings. I replied that I have an older sister. The next question: “Is she…OK?”

A bit taken aback, I replied that both of us are “OK” but that she is sighted.

One of the interesting consequences of ridesharing for disabled people is that we often become targets of seemingly-innocent questions like these while in the car with strangers. But, this issue was prevalent far before Lyft and Uber were a thing. Many of us field curious questions from strangers of all ages, whether on the street, in class, while out with our children, or in a multitude of other settings.

Some of the most common questions involve the cause, duration, or severity of our disabilities. Others may ask us how we perform specific tasks or about the assistive technology we use. Occasionally, questions regard “taboo” topics like sex or toileting. (I have not yet been asked about these things, but some of my friends and colleagues have).

I consider myself an open person. There is really very little I keep private, and as someone with a curious streak myself, I usually indulge these questions. But, as a member of the larger disability community, I need to explain why such questions can, at times, cause harm. There are a few reasons:

*In my own case, the cause of my disability was boring-it was just a random genetic glitch and there was no trauma involved. But for others, their disability may have been caused by a traumatic event, or disability onset could have been traumatizing in itself. Even the most innocent questions can unintentionally re-traumatize.

*When someone only wants to talk about my disability, it can feel a bit dehumanizing or like I am nothing more than my disability. In the example above, my Lyft driver could have asked about my job, my house or any of the other things that came up in my conversation with my friend, but instead, he just focused on my disability. When strangers want to focus only on my disability, it makes me wonder if they think I can add any other value to a relationship.

*As a cultural norm, certain topics are generally considered “intimate” topics only discussed between people who know one another. At least in western cultures, medical details are usually not discussed at length between strangers. Asking intimate questions so early in a relationship can suggest an inappropriate level of intimacy in much the same way as an unsolicited physical contact.

*Some questions can be worded in an ableist way, e.g., “Is your sister OK?” implies that being blind is not an “OK” way of being.

*Sometimes the disabled person is too busy, distracted or tired to answer questions. For example, when I’m trying to get a research article finished ahead of a deadline, that’s not the time to ask me how my screen reader works or to ask complicated questions about how severe my blindness is or why I travel with a cane instead of a guide dog. Same if I’m running after a bus, or half-asleep in the back of your car after a long day.

So, if you are genuinely curious and want to learn more about disabilities, what should you do? Consider the following checklist as a guide if you want to ask questions of a disabled stranger in your presence:

*Would I feel uncomfortable asking this type of question of a stranger without disabilities? For instance, would I feel uncomfortable asking a stranger how they got their scar or their bald head, or about their sex life? If it feels like a “personal question,” it probably is.

*Is this a question I can ask Google instead, or search the disability blogosphere?

*Does the disabled person appear rushed, preoccupied, or tired?

*Is there something else I could bring up first, to build rapport and get to know the person before broaching the disability topic?

If the answer to any of these questions is “yes” then consider holding off on discussions of disability until you have built a closer relationship in which some questions become part of mutual self-disclosure. In the meantime, you can learn a lot and satisfy curiosity by simply getting to know us as people. The best way to learn? Chat with us, ask us to dance, hire us, work with us, play with us. If your kids are the curious ones, introduce them to play with disabled kids, or with the kids of disabled parents. And check out this post on answering kids’ questions about disability!

Love and Other Disabilities [Repost]

Content warning: forced abortion.

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“Based on this assessment, the judge has ruled that it is in the woman’s ‘best interests’ that the pregnancy be terminated. I beg to differ, and do so based on some experience. For I am an intellectually disabled woman’s son.”

“I had a mother who was dedicated to my life, overcoming significant obstacles—and profound heartbreak—to ensure that I was raised in the best home possible. She taught me about the beauty of difference, the value of non-comformity, the dangers of seemingly ‘well-meaning’ people to our most vulnerable populations, and the power, and purity, of a parent’s love. Without her being a part of my life, I would be less creative, less kind, less intelligent, less good.”

Last week, a judge in the United Kingdom ruled that a pregnant woman with intellectual and psychiatric disabilities must have an abortion-even though the woman wanted to give birth and the woman’s mother was willing to raise the child. Fortunately, the ruling was quickly overturned in an appeals court. However, before the ruling was overturned, Harold Braswell wrote this powerful response, reproduced below and linked at the end of this post. Harold has a valuable perspective to share, as the son of an intellectually disabled woman. Although Harold, too, was raised by his grandmother, his mother played an important role in his life. Harold’s story not only sheds light on issues facing disabled parents and parents-to-be, but it also helps us take a broader view of what it means to be a mom.

When I was a kid, a strange woman would visit our house. Short, with stubbily cut hair, she would almost never turn to you, not responding even if you called her name. She dressed flagrantly, in patchwork clothing that she had sewn herself, and spent the entirety of her visits in a maelstrom of cleaning. Whipping the record player with a rag, banging colored pencils into a souvenir plastic cup, she appeared as some hybrid of the Tasmanian Devil and a hobo clown. Yet she did appear, every month, and at the end of her appearances, I would hug her, tell her I loved her, and give her two kisses: one on each cheek. A strange woman, a strange ritual—even stranger because, as I knew, this strange woman was my mom.

Yesterday, a British judge, Nathalie Lieven, ruled that an intellectually disabled woman should be forced to have an abortion against her will. The woman—who remains unnamed, ostensibly out of respect for her privacy—wants to have the child, but, because of her disability, she is presumed incompetent to make this decision. Attending medical doctors have judged that her giving birth and eventually having the child removed from her custody would be extremely traumatic because of her intellectual disabilities. Based on this assessment, the judge has ruled that it is in the woman’s “best interests” that the pregnancy be terminated. I beg to differ, and do so based on some experience. For I am an intellectually disabled woman’s son.

My mother, Andrea Braswell, acquired her intellectual disability as a result of her education. She was deaf, but the school she attended as a child did not teach sign language. She was “taught”—via a method called “oralism”—to lip-read and enunciate words that she could not hear. She did not finally learn a language until her mother removed her from school when she was eleven years old. By then, the damage had been done. Children who do not have language access during their formative years experience what is now called “language deprivation syndrome.” This condition has been analogized to brain damage, and found to underlay a range of psychiatric disorders with which deaf people are disproportionately diagnosed. With regard to my mother, its effects were severe.

This severity makes me extremely skeptical of this judge’s ruling. I do not doubt that the UK woman’s intellectual disability will perhaps make the process of giving birth complicated, and that it may hinder her from raising her child herself. But, like my mom, she, too, can be a mother, and her being so can be very worthwhile for both her and her child.

My own birth was difficult, perhaps even traumatic, for my mother. It left her in a pelvic sling. And my family was so certain of her inability to raise me that they had me circumcised by a mohel on the third day, not the eighth: They assumed that I would be given up for adoption, and wanted ensure that, wherever I ended up, I would be a Jew. Ultimately, I was removed from my mother’s custody, but instead of being given up for adoption, I was taken in by her mother, my maternal grandmother.

But though she did not raise me herself, my mother remained, always, my mom. She visited me monthly, sending, almost every week, postcards and gifts. These visits, postcards, and gifts were, at times, confusing for me, even unwelcome. But not always, and, over time, I came to appreciate them and also her. We developed a strong relationship, and, on becoming an adult, it was I who began visiting her, and sending her my own postcards and gifts. When my grandmother took me in, I did not lose my mom as a mother. I merely—and miraculously—gained another one. And my mother, though she did not personally raise me, never lost her son.

The situation of this young UK woman is analogous. Her mother supports her decision to carry the baby to term. Perhaps, with appropriate accommodations, she herself can raise the child. Even if not, there are ways to ensure that the woman remains a part of the child’s life. It is notable that the attending social worker also supports the woman’s decision, against the decision of the doctors. Doctors are not trained to evaluate the psychosocial factors and family dynamics most relevant to this case; they also, studies show, frequently underestimate the abilities of disabled people and devalue their very lives. The social worker’s expertise should be privileged. This is particularly the case because this expertise supports the woman’s own expressed desire.

But it is this desire that judge Lieven throws into question. “I think she would like to have a baby in the same way she would like to have a nice doll,” Lieven said. This statement is ignorant, condescending, and, yes, bigoted. My mother did not know all the particulars of parenting (no parent does), but she wanted a child for years prior to my birth. She knew the difference between a baby and a doll. This woman does too, and her wish should be honored.

My mother’s wish was. She had a son, and she was, to him—and always will be—his mom. Her impact on me was profound, and beneficial. I had a mother who was dedicated to my life, overcoming significant obstacles—and profound heartbreak—to ensure that I was raised in the best home possible. She taught me about the beauty of difference, the value of non-comformity, the dangers of seemingly “well-meaning” people to our most vulnerable populations, and the power, and purity, of a parent’s love. Without her being a part of my life, I would be less creative, less kind, less intelligent, less good. Because I was a part of her life, she was able to live her dream—a dream that few people believed achievable, one that, even today, too many, too easily, would deny.

The public outcry about the denial of this young UK woman’s dream has been largely led by what might gently be called “Catholic Twitter.” Catholic commentators have interpreted it as symptomatic of the evil of a secular liberal society that devalues life, purporting such ills as “Drag Queen Storytime” and abortion on demand. As a basically secular, liberal person (albeit with intermittent internal conflicts about my status as such) and recent attendee of “Drag Queen Story Time,” I reject these arguments.

In reality, this ruling should be recognized as evil by anyone. It is baldly “anti-choice,” and fails even the thinnest liberal commitments of opposing bigotry and protecting minorities. It shows an utter lack of creativity, a disturbing closure to the dynamism of life, an unwillingness to even minimally accommodate difference. Thus, though this story began as yet another entry in the so-called “culture wars,” my hope is that it end up somewhere else: as a “unicorn,” the rare, perhaps impossible, issue that really everyone can agree is bad.

My experience with my mother has shown me that such cross-“culture war” understanding can, in some instances, be achieved. In my early twenties, I had a “quarter life” crisis, provoked in part by the seemingly incompatible conflict between my relationship with my mother and the categories of the world that I had just entered as an adult. I began seeing a therapist and, with her encouragement, started volunteering at a Catholic home for intellectually disabled women. Working at the home was, among other things, a way for me to “work through” the seemingly indigestible feelings that I had about my relationship with my mom.

It did that. But it also did something more. I watched, with wonder, how, with minimal resources, a group of nuns cared for women who, otherwise, might have been abandoned to institutions or even dead on the streets. But “caring for” is perhaps not the right term, for the nuns lived with the women, viewing them as equals and providing an environment in which their basic equality, and value, could be perceived as such. I perceived it. And, by doing so, I became better able to perceive, and value, my own mother. I deepened my relationship with her; I also began to study with Catholic religious sisters, and, with time, to work at a Catholic institution myself.

As a secular Jew at a Catholic university—in a department with substantial theological commitments—I sometimes wonder what I’ve gotten into. I have no intention of becoming Catholic, and I disagree strongly with many of the tropes dominant in American Catholic discourse. But I also appreciate many Catholics and, in a way, Catholicism itself. In a society that, too often, undervalues disabled people—making their very status as “persons” a topic for debate—Catholics have consistently advocated for the intrinsic worth of their lives. I may not agree with the theological presuppositions based on which they do so. But I am grateful nonetheless.

It is my hope however that this does not remain “just” a Catholic issue: That there is a broad public outcry both in England and internationally, and that the decision is reversed. If that doesn’t happen, I hope that the Vatican does what it can to intervene. It may not come to that. But my fear is that it already has.

Harold Braswell is an assistant professor of health care ethics at Saint Louis University. He is the author of The Crisis of US Hospice Care, which will be published by Johns Hopkins University Press in August 2019. He can be reached on Twitter at @haroldbraswell.

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Are We Trying Too Hard to Teach Our Disabled Children?

“We don’t have to devote hours every week to driving [our children] to therapies and classes.

We don’t have to battle with their anxiety because we are trying to expose them constantly to things they hate; with the belief that it will prepare them for life.

We do not have to accept the professional and social assumption that our children are faulty, and that they must be fixed or tinkered with in order to have a good quality of life.”

Ally Grace, autistic parent of three autistic children

I recently saw an interesting post on a Parents of Blind Children Facebook group, which I will paraphrase here. “My 19-month-old son receives early intervention services, and some therapies from the school. The local Commission for the Blind wants me to enrol him in their program for more therapy. Does my son really need so much therapy? He’s reaching milestones fairly well on his own. We just moved to a new state, I work full-time, and I’m pregnant-I guess that’s affecting my thought process on this.”

In the western world, families of children born with disabilities often find themselves negotiating a complex web of systems. It always starts with doctors-often too many doctors, sometimes multiple unpleasant, wallet-draining diagnostic procedures-to identify the congenital disability in the child. Then, once a disability is pronounced by the medical gatekeeper, the family is urged to sign up for “early intervention” services that may or may not be government-funded. The services vary widely depending on the disability and the locale, but usually they include “therapies” designed to correct specific deficits or “delays” in the child during critical periods of development. Therapeutic goals may be based on assessments showing what the child is lacking, with goals oriented toward ability-centric milestones like walking, speech, or “typical” social interaction. There is often an assumption (spoken or unspoken) that congenitally disabled kids will have adverse outcomes without the intervention.

In my own case, there was a private agency in my hometown where my family and I received early intervention after I was diagnosed blind at six months of age. I ended up going to preschool there, and later, to their summer camps. When I was in high school, I read the organization’s Website, where they justified the importance of their infant programs by stating that “research shows that at least 80% of what children learn in their first five years of life is learned visually.” They touted their services as being vital to compensate for all the information that blind children cannot acquire visually. At the time, I found their statistics persuasive. But then, I met a blind teacher of blind children, who suggested a different interpretation. “Perhaps 80% of what *sighted children* learn is visual and 20% is nonvisual,” she explained. “But that doesn’t mean that blind children, on their own, learn 80% less. It just means they learn 100% from nonvisual experience.”

Undoubtedly, there are children and families who benefit from state-funded early intervention. But I have long questioned whether it truly is vital for everyone, or if there could be unintended harms when therapists are unfamiliar with the specific disability condition, or if they hold negative, deficit-based attitudes about congenital disability. In the parent groups, I hear from parents who are overwhelmed by all the different professionals, schedules, and expectations. Young kids who may be similarly overwhelmed, seemingly resistant to therapy. With blindness, I hear about blind kids working with physical or occupational therapists who’ve never worked with a blind person before, and it makes me wonder how their intervention could possibly be more helpful than just engaging in ordinary play.

And then there are scientific issues. In countries where early intervention is the norm, we don’t have a non-intervention control group against which to evaluate impact. So, if a child shows a positive outcome, it is often attributed to the intervention, but if a child shows a setback, it may be attributed to the inevitable impact of the disability itself. However, it’s possible that kids would do just as well without intervention, and that the “benefits” we see are just effects of time and nature on development. Conversely, we are learning through anecdotes that some interventions, like Applied Behavior Analysis (ABA) for autism, can cause trauma. But without controlled studies, families and practitioners might conclude that signs of harm (such as increased anxiety) are just “symptoms” of autism rather than effects of the intervention.

Is there an alternative? A paradigm that celebrates congenital difference rather than minimizing it?

Back in 2010, I stumbled on this blog written by Marie about her son, Jack. Jack was born with a syndrome that affects his vision, fine motor skills, and speech. When Jack was four years old, Marie wrote about Jack’s early years:

“We began physical therapy when he was only a few months old. We added occupational therapy and speech therapy as he got older. I watched the therapists work with Jack and I tried to do what they did at home. I constantly pushed for Jack to do more and more and more. He’s a smart, resilient little boy and I knew he could do more.”

But then…

“I realized that Jack already had therapists and teachers and if we lost a therapist or teacher we could get a new one. There was one thing that I could do that noone else could. No one else could be this little guy’s Mama.”

During the summer after Jack turned four, Marie pulled him out of all “therapies” and just joined him in his play. She took him to the park, the pool, and on other outings that incorporated natural lessons. Marie reported that during that summer, Jack began talking and engaging much more with people around him. Eventually, Marie pulled Jack out of school and began following an unschooling child-led approach to his education.

Similarly, multigenerational disabled families might choose to forgo traditional “intervention” in favor of community and disability acceptance. For example, Deaf parents of Deaf children often reject “oralist” education, instead immersing their children in the Deaf community and sign language, and sending them to Deaf schools. Autistic parents of autistic kids, like the one I quoted at the top of this post, might engage a parenting process that encourages their children’s passions, their unique ways of solving problems, parallel play, and self-acceptance. Related to this is the idea that parents can be their child’s first teachers, whether they share the child’s disability or not, instead of waiting for “professionals” to step in.

I don’t think there’s one answer for every family. But, I want to see some changes in the dominant paradigm. For one, I wonder if we could establish a role for “disability navigators” to help parents bridge between the medical and the educational systems when they first suspect disability in their child. These navigators could be disabled adults, veteran parents of grown disabled children, or both. Such individuals could focus on helping the family members accept the disability, become part of the relevant local disability community, and explore all the services and supports available-instead of just shunting them to the dominant early-intervention provider in the area.

Furthermore, I believe we need to be doing ongoing research on these established early-intervention therapies. Many were established in the 1970s when cultural attitudes about disabilities were very different than they are today. At that time, a child’s acting less “disabled” was seen as a positive outcome. Today, we are beginning to recognize the importance of disability acceptance for disabled people’s long-term well-being. I want to see some data showing how various intervention practices impact children’s well-being and overall adjustment over time, not just how well the children can perform in ways that please nondisabled adults. With that information, we might be able to make informed recommendations to families that truly benefit our next generation of disabled people.