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Four Tips for Crossing the Disabled Adult-Parent Divide [Guest Post]

When a nondisabled parent discovers that their child has a disability, they are thrust into a uniquely difficult position. They must learn to support and accept an aspect of their child’s experience that is usually unfamiliar to them. Despite the fact that up to one in five people has a disability, most nondisabled parents have not gotten the kind of disability exposure needed to really understand and accept their child’s disability. As a result, many parents in this situation tell me they are overwhelmed, sad, devastated, terrified, or have other intense negative reactions to a disability diagnosis for their child.

An increasing number of parent support groups have emerged on social media for parents of disabled kids. This is, overall, a very positive thing that allows parents to share experiences and advice with other parents. Disabled adults frequently join these groups to share their own childhood experiences and advice with parents. This, too, is perceived as a helpful thing by many parents. Disabled adults can offer the kind of cultural awareness and knowledge based on lived experience which parents rarely get in the wider world before they have a disabled child.

However, as this week’s guest post points out, sometimes tensions can arise in online groups between nondisabled parents and disabled adults (with disabled parents often ignored altogether). As in any online environment, tactless and disrespectful comments on either side can destroy an otherwise supportive climate. But there are also intergroup dynamics that may arise in these groups which mirror the historical ableism patterns that disabled people have experienced for centuries. Parents new to the disability community may not recognize these patterns. The intent of this guest post is to help parent groups build policies that allow parents to fully benefit from the support of disabled adult members.

Four Tips for Crossing the Disabled Adult/Parent Divide
By Tasha Chemel

In the disability community, there tends to be an artificially imposed divide between parents of disabled children and disabled adults. This divide can become magnified in online support groups where miscommunications abound and the tone and intent of posts can easily be misinterpreted by both sides. The good news is that I strongly believe that this divide is far from inevitable. Based on my own experience as a blind adult member of two groups for parents of blind and visually impaired children, I offer four tips for how parents and disabled adults can work together to create parent groups that are conducive to dialog and collaboration.

1. Mixed messages.
As disabled adults, we sometimes receive confusing and mixed messages about the nature of our role in parent groups. It often seems that though we are permitted to give tangible and concrete advice about finding the best screenreader/laptop/¬cane/wheelchair, etc., our efforts to reframe parents’ questions are not always appreciated. For example, a parent might ask about the best way to get a road sign installed stating that a blind child lives in their neighborhood, whereas a blind adult might point out that this kind of sign might be stigmatizing for the blind child. Some parents get upset when such reframes occur, and this is partly because they were not asking for a reframe in the first place. I think the ground rules have to be clarified here: if the parent group as a whole doesn’t want to allow these reframes, then this has to be made explicit. Disabled people will have to decide whether they are all right with having a conditional role in the group.

2. Safe Spaces
When a child is newly diagnosed, fighting ableism on a systemic level is the last thing most parents are thinking about. Many parents are struggling to simply get through each day. For this reason, it’s not surprising that they need a place to grieve and vent. When disabled adults join parent support groups, it should be with the understanding that parents are at different places on their journeys, and that some interactions might be very helpful for parents but are not necessarily healthy for us to witness. Sometimes we might have to step back from the group as a result. At the same time, there is a difference between a parent who expresses grief and a parent who makes sweeping generalizations about all disabled people and acts defensively when a disabled adult attempts to educate them. Disabled adults should feel free to seek out admins in these types of situations, without being afraid that the admin will use parents’ need for a safe space to shut down any mention of ableism. In addition, the group should decide whether it will allow public call-outs.

3. You’re not a parent.
A common response I receive when posting to blind parent groups is that I am not a parent so my comment is not valid. This is true. I can’t speak to what it’s like to parent a blind child. I can, however, speak to the lived experience of being one. This is a valuable perspective for parents, since disabled children become disabled adults. As a disabled adult, I’m uniquely qualified to talk about how my parents’ decisions have affected me. When disabled adults post to parent groups, they do have to keep in mind that there are aspects of a situation they might not be thinking of. For example, if a disabled adult suggests that a parent take time to do something for his or her child that is very labor-intensive, they are not considering that the parent might have other demands on their time, such as additional siblings or work responsibilities. At the same time, parents shouldn’t dismiss comments made by childless disabled adult’s simply because they are not parents. They also shouldn’t automatically assume that a disabled group member is not a parent, or that a parent member is not disabled. Disabled people can and do parent disabled children, and the assumption that all disabled people are nonparents is rooted in unintentional ableism.

4. Silencing of Disabled Adults.
Finally, disabled adults have historically been silenced or spoken over by parents and professionals. When a post written by a disabled adult gets deleted, it sends a message that the adult’s perspective is not important or not welcome. If a post gets really out of hand, freezing it, rather than deleting it, will usually solve the problem. IF a parent group has collectively decided that it wants disabled adults to be valued members of the community, then the group must do its best to ensure that the deeply entrenched patterns of silencing of disabled people are not replicated.
Tasha Chemel is a blind writer, teacher and potter. She has master’s degrees in social work and education from Boston College and the Harvard Graduate School of Education. Currently, she is a writing tutor at two universities and is also completing an internship in academic advising. her essays and creative work has appeared in Wordgathering, Getting Along with Grief, Breath and Shadow, and the anthology Barriers and Belonging. Find her on LinkedIn at https://-www.linkedin.com/in/¬tasha-chemel-bab8556/

RISE Up! and Fan the Flames of Change

One day about a week before starting my first year of college, I shared a paratransit ride with a middle-aged woman who had become disabled from a brain tumor. She told me that she had been employed as a social worker, but after losing some vision and motor function on one side from the brain tumor, she had lost her job and was unemployed for the past six years.

That night in my diary, I wrote with shock and concern about her unemployment. I was confident that she could find work if she just believed in it enough. I said I wanted to be a professional who could support blind and other disabled people to reach their potential. I wrote that “no blind person will be on Social Security if my dream comes true.” But then, I wrote that I didn’t want to work within a bureaucratic system because “bureaucracy will only slow me down.” The diary entry concluded with a clear vision, but no clear plan of execution.

At that moment I had little awareness of the systemic barriers that keep disabled people unemployed, nor did I understand the complex intersections between disability, socioeconomic status, race, gender, and other social categories. I had just graduated from one of the most privileged public high schools in my city, with plans to study biology and become a doctor or a biomedical researcher. I believed that a disabled person could do anything they wanted to do, if they thought it was possible. Employment barriers seemed entirely artificial to me. Yet even then, I recognized that a change agent was necessary to bring down those barriers.

The drive to be a change agent was what guided me through four years of college and six years of grad school. I got involved in the National Federation of the Blind, where I learned how to make change by mentoring and being mentored, through legislative action and public persuasion. In that organization I met many blind people from all walks of life who struggled against low expectations and negative public perceptions. At the same time, I learned that there was an academic discipline devoted to studying, among many other things, how negative public perceptions of groups originate and how to change them. As a scientific thinker, I was intrigued by big questions. Eventually I chose the Ph.D. path, and four years ago Wednesday I defended my dissertation in social psychology.

I was always torn between wanting to make change at the level of the individual, one person at a time, and wanting to make change at the level of the entire social system through research and policy. I struggled with the threat of bureaucracy slowing me down on both levels. On one hand, I feared that if I just worked with individuals (as a vocational rehabilitation counselor for example), my impact would be constrained by the problems embedded in our service systems. On the other hand, if I confined my activities to researching and writing from the ivory tower, I feared that those discoveries would only reach other academics and never make their way down to the individuals who needed them most.

Ultimately, I figured that a doctoral degree would give me the most clout to make change. So, I weathered the storms of the doctoral journey. I fell in love, then turned down a near-perfect professor job offer in a small town where my then-fiancee feared he wouldn’t be able to find work. After graduation, I took a postdoc fellowship that broadened my knowledge and skill set, and competed unsuccessfully for a handful of academic jobs, none of them ideal. Eventually my husband found a federal job, and I created Disability Wisdom Consulting in the spring of 2016. Over the past two years, in partnership with some dynamic clients, I have had the pleasure of generating social-scientific knowledge about disability issues and bringing it to the people and groups with the most capacity to implement it-through my research, training, and knowledge translation services

Then, just two months ago, my professional life took an exciting turn. I became the deputy coordinator for a new pre-employment transition program for blind youth ages 14-21 in northern Virginia. I serve in this role approximately half-time, while still maintaining my Disability Wisdom Consulting operations.

We call the program Project RISE (Resilience, Independence, Self-advocacy, and Employment). Modeled after similar programs in a handful of states, we hold monthly meetings where students learn about a range of career-related topics from blind professionals. They also learn independence skills like cooking, budgeting and using public transportation. Notably, our program is unique from other pre-employment transition programs in that all our core staff are blind and the students receive group and individual mentoring from actually-blind people who demonstrate what is possible for them and can truly relate to their experiences.

One of my roles as deputy coordinator is to compile student progress reports. Due to my natural affinity for data, I love doing this. In fact my boss teased me because I seemed more excited about the reports than about the actual meetings! In the current round of reports, we are compiling the results of students’ career exploration activities. Our students want to become doctors and lawyers, teachers and engineers, programmers and musicians, writers and chefs. Most have multiple interests. And no career aspiration is written off because of disability.

As deputy coordinator I get a chance to help develop the program at a high level. But I also enjoy opportunities to mentor individual students. I gave one student feedback on his resume and shared internship referrals with another. I discussed careers in the psychology field with a third student, chatted about the challenges of dating as a blind person with a fourth, and connected several with blind professionals working in their fields of interest. It is a treat to share my own life experience with young people who are eager to apply it in their own lives.

Then one day last week, I was invited to call into a student’s transition meeting. I remembered how disempowering it could feel to sit at a table of professionals talking about me, but rarely including me in the conversation. I called the student before the meeting and we discussed ways he could participate. During the meeting, I invited him to share what he had been learning in our program. He was reticent at first, but gathered confidence, and eventually spoke proudly about his experience using a cane for the first time. He discovered that his voice mattered. At the very end of the meeting, he spontaneously told everyone that when he gets a little older, he wants to go around and give public speeches. As the others in the room were packing up to leave, I heard him say he wants to change the world.

After I hung up the phone, I couldn’t stop smiling. I was struck by the flame of passion that burst forth when a young man discovered his voice and the confidence to use it. Just like me at his age, he expressed a clear vision without a clear plan of execution. But, plans of execution will only slow us down.

As a society, we need our young people to drive change. As the recent teen walkouts suggest, youth are not just our future, but our present too. We need to nurture the small flames of passion and inspiration that ignite in young people’s minds-whether it happens in a paratransit van, in bed at 3 a.m., or at the very end of a transition meeting. These flames come from people who have not yet become jaded or “burned out” by the negative realities of our society. We must never extinguish these flames in the name of realism. Instead, we must offer the benefit of our life experience to feed those individual flames and bring them together into a massive fire. Only then can we build the cultural shift that will break down misconceptions keeping us from our dreams.

After 15 years, I now have a better understanding of the complex factors keeping people with disabilities from full participation in the workforce. Removing those barriers will require change on multiple levels. But there is still power in the idealistic belief that it will happen. While I have no idea where I will be standing in another 15 years, nor where our students will stand, I am glad to be standing in the fire with them.

How Would We Know If We Overthrew the Mental Health System? (Repost)

I found the below article very thought-provoking. I don’t agree with all the ideas expressed in it, but I believe it gives us a lot to think about as inclusion advocates-not only regarding how we treat people with “mental health conditions” but also how we think about things like consent, competency, and who gets to define disability.

I don’t personally agree that psychiatry is a “pseudoscience” or that it should be entirely overthrown. In a limited number of cases, particularly ones in which an individual’s behavior threatens another’s safety, a brief hospital stay may be the only feasible solution. Similarly, I imagine there are individuals who are genuinely, subjectively suffering from their symptoms, and benefit from psychiatric interventions.

However, I am troubled by the diversity of human traits and tendencies that are classified under the DSM-V as symptoms of mental illness, and the clusters of traits and tendencies that are pathologized as mental illnesses. Sometimes, I try to imagine meeting a person who has absolutely none of the symptoms of any DSM-V diagnoses. This mythical person would be in constant emotional balance with never a hint of anxiety, depression, rage, or mania. They would never exhibit any impulsivity, hyperactivity, inattention, or apathy. When I contrast this mythical individual with real people in my life (including myself, as I am definitely not free from neuroticism), I can’t help but imagine that this mythical person would also lack passion, creativity, empathy, attention to detail, and so many other uniquely human characteristics we prize. In fact, the thought experiment always leaves me feeling a little, well, depressed.

This article also raises important issues about the role of medical professionals in the disability experience. Under current policies, medical professionals have the authority to deem an adult as decisionally incompetent. Is any individual truly incompetent to make decisions regarding their own life? And if so, what criteria should be used to make that determination? Is there a magical cutoff on some assessment tool that means a person must give up their autonomy?

Furthermore, across all types of disabilities, medical professionals currently act as gatekeepers, determining who is or is not eligible to receive disability-related supports. This applies not only to income and lifesaving healthcare benefits, but also to vital educational modifications, communication aids, etc. a medically driven eligibility system not only penalizes people who don’t have the resources to access a medical proof of disability, but it also seats disability as an individual problem affecting a stigmatized few, rather than a part of the human condition that can be ameliorated in a cooperative way. I agree with the author in advocating a universal basic income in place of a medically driven disability benefits system. We must also find a way to bring down the cost of assistive technology and training so that it becomes available to all consumers who need them, without having to have that cost subsidized by a medically controlled service system.

How Would We Know If We Overthrew the Mental Health System?

Remembering Darick Williamson

Last week, unexpected sad news came to the Louisiana Center for the Blind (LCB) extended family. Darick Williamson, cane travel instructor and a teacher of future cane travel instructors, died suddenly from a heart attack on March 22, 2018. Darick was my cane travel instructor when I was an LCB student ten years ago. He also taught and mentored several of my blind friends who are now teaching cane travel in schools and adult training centers across the country.

Like many LCB alumni, I have struggled to find words that can give adequate voice to Darick’s legacy. I could share stories of the adventures I experienced under his instruction, the lessons I learned about orienting myself and moving about in unfamiliar environments, and the confidence I gained through even (and especially) the scariest of those adventures. I could share how, as a man who happened not to be blind himself, Darick truly understood and conveyed his belief in blind people’s ability to travel safely and efficiently. But I cannot find the words to fully capture the impact he made, directly and indirectly, on hundreds of blind people through his students who became cane travel instructors themselves and passed his philosophy on to their own students. Instead, I will simply share his obituary, and a link to his writings for the Professional Development and Research Institute on Blindness (PDRIB), in the hope that his words will continue to educate and inspire.

Darick’s Blog Channel
Darick’s Obituary

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.