Dear Nondisabled People, Episode 2: Words of Wisdom from the National Rehabilitation Information Center

Photo of Jess Chaiken on a river cruise in Prague
Jessica Chaiken

Photo of Mark Odum on the roof of the Department of Labor building
Mark Odum

On this episode of our podcast series, Jess Chaiken and Mark Odum from the National Rehabilitation Information Center share their observations of the past, present and future of the disability rights movement.
Click here to listen to this episode
or read the transcript below.

Zoe Joyner: Hello and welcome to our second episode of Dear Nondisabled People. I am Zoe Joyner and today I will be cohosting this episode with Arielle Silverman.
Arielle Silverman: Welcome. Today we have two guests with us, Jessica Chaiken and Mark Odum from the National Rehabilitation Information Center. I will go ahead and let you guys introduce yourselves. Jess?
Jessica Chaiken: My name is Jessica Chaiken. I am the media and public education manager at the National Rehabilitation Information Center. Mark?
Mark Odum: I am Mark Odum, the project director of NARIC. It might be noted that Jess and I have been together on this project for what, some 18 years, so we will probably be thinking the same thing as we answer some of these. In addition, I also have a spinal cord injury which I sustained 44 years ago next month. I’ve been very active in the spinal cord injury group and an advocate for all people with disabilities. That’s me.
Arielle: Thank you both. We have prepared some questions that we would like both of you to answer for us. Zoe do you want to begin with the first one?
Zoe: Sure. What challenges have you had in your personal and work life?
Jess: Mark, I’ll let you take that one.
Mark: Okay. As I said I have a spinal cord injury. Since I was injured in 1977, you roll the clock back. That was before the Rehabilitation Act and almost all legislation as we come to know it now like the ADA. Having a disability then was quite different than having one now. I am a full-time wheelchair user and even simple things like curb cuts in cities to get up and down curbs were unheard of in those early days. My challenges were physical in nature as far as the physical barriers. In addition, in the early days you still had a lot of folks that didn’t know how to approach a person with a disability and weren’t really sure. If you didn’t have a personal association with someone with a disability, you probably had no idea what it was about, so you face those –I don’t know–I don’t want to say that they were prejudices, but certainly people having certain associations and feelings and working around them.

As far as work life, I have always felt it has been a pretty level playing field. One thing in work is that you are judged by what you produce. Pretty much work is, as it should be, a results-oriented type of atmosphere. If you are producing well and working well and have good results, then I think you do well just the same as most anyone else. Jess, you might want to expound on that a little.
Jess: I think as far as our team is concerned, everybody is coming to the table at the same level. We are all bringing our individual experiences. I am not a person with a disability, but I have educational experience in disabilities. I have a masters in ASL linguistics. I think we all came to this job not necessarily because we were people with disabilities but because we were focused on providing the right information resources to people who need them in the best way possible. The biggest challenge for me has been tracking new technology, how it is being used by the community—by people with disabilities and rehabilitation professionals and making sure we are using it to the best advantage.
Mark: I agree. I think everybody on our team certainly comes in with a special sense of helping out and helping people. You hear about paying it forward and it isn’t necessarily something like that, but we all have an extra sense of doing something helpful. On the information end, I talk to our information specialists frequently about when they do find a piece of information or they help someone out, that really makes a difference in someone’s daily life. I like to say it’s as good as a paycheck. It might not pay the rent but the personal satisfaction you get in helping someone out and providing that kind of information is really shared by each of us heart to heart.
Arielle: Great, thank you. The next question for both of you, and Jess you can start, is how has your childhood impacted your career choices and anything that has impacted your decision to work in the disability field.
Jess: In terms of my childhood, I really loved the hunt for information. I like doing the research. I used to joke with a friend of mine that I really liked looking stuff up. She said, “You should probably be a librarian.” As it happened, that’s the career that I ended up in. In terms of working in disability, I really came to it through ASL because I have a love of language and I discovered American Sign Language late in my college career and decided to pursue that. Besides that, I think I was probably like most Americans, you kind of have a peripheral experience with disabilities until you find yourself in a position where you are unable to function like you did before. Since then, of course I have a much more profound understanding. I’m sure that will change over time as well.
Mark: I think for myself in childhood, I always leaned towards writing and being a writer. I also happen to have quite a love for sports so early on I kind of felt like I must be a sports writer somewhere along the line. I have a degree in journalism. I had two years of college finished before I was injured in a diving accident. At that point, and again back on the subject of not a lot of accessibility, I realized I wasn’t going to get back into the locker room very easily to interview sports figures. I realized that I still had this love of writing, but being a sports writer wasn’t going to happen. Along with the writer goes hand in hand with research as Jess said, looking things up, whether it’s background information or whatnot. I have always enjoyed looking things up and wanting to be close to the research to know the latest going on. There is something to be said for that hunt. It’s neat to have a challenge. You might know something is out there on the Internet and it’s just a matter of trying to find it and hunt for those different gems, whether it is for background information for an article or getting back to some of the primary work of NARIC to help someone out with a problem they are having. I think that is the childhood tie-in I have.
Jess: Definitely the wish to connect the right thing to the right person, whether it’s as librarians doing research or as a writer bringing experiences to the reader, that’s where we’re both coming from.
Arielle: Next question?
Zoe: What is the mission of your organization?
Jess: NARIC is a library and information center and we focus on disability and rehabilitation research. Our core mission is to collect and disseminate the results of projects funded by the National Institute of Disability Independent Living and Rehabilitation Research and get that research out into the community. We maintain a fairly large collection of research literature and then we also have these information and referral services that, more often than not, connect people to organizations rather than researchers, but we do spend a fair amount of time and energy developing resources to highlight what the NIDILRR community has created, the work that they are doing, and getting people engaged in their research. Do you want to add anything to that Mark?
Mark: No, I think that’s pretty close. I think at a secondary level, we kind of reached out and made sure that we are looking at the information and trying to expand its use and usability. We have a couple of existing projects now where we are putting research into lay persons language to broaden its appeal. We are trying to disseminate information as widely as we can.
Arielle: how has legislation impacted the disability community or impacted NARIC in your opinion?
Jess: The most recent legislation that impacted NARIC was the Workforce Investment and Opportunity Act which moved our funding agency NIDILRR from the Department of Education to the Administration for Community Living and the biggest impact that had for us is it really made us focus on community participation. What does it mean to ensure that a person can interact in their environment and engage in the community of their choosing and what can we do to make that possible? I will let Mark speak to other legislation.
Mark: I think generally, legislation has helped people with disabilities, their family members, and advocates for folks with disabilities, realize that they belong, that they are entitled and have civil rights to everything that one might have if they didn’t have a disability. It makes a big difference I think when you approach with the feeling that “I belong” instead of the feeling that “I need a handout.” Generally, I think folks now know that they belong, and they are looking for information because they have a right to that information. You might be so crass as to say I pay taxes and I know my taxes go toward this, so I want it. It’s no different than using the anecdote that there’s a big uproar about televisions and having closed captioning put in every television. Some in the community said why do I need to pay for this technology I can hear, and I don’t need this. Very quickly, the deaf community came back with “All my life, I’ve been paying for the sound you listen to.” You belong, and you have a right for every piece that everyone else has a right to. It is refreshing, and I think it has been embraced recently. That is what I would say in addition to Jess’s part.
Zoe: How do you think the life of people with disabilities has changed over the past 50 years?
Jess: I can only speak observationally, so I will let Mark answer that one.
Mark: I’m over 50 and approaching 50 years as a person with a disability. But certainly, again with the legislation, that the ADA has brought forth both physical barriers and just generally acceptance. There’s no child with a disability that doesn’t know the ADA. There’s no child that doesn’t know that many years ago, they weren’t allowed in public schools. They were able to get that public education through legislation. That is an equalizer quite honestly. The more folks with disabilities get outside and are participating and have been allowed to participate and the doors have been open to participate, the more they associate with folks that might never have come across someone with a disability. That is an awareness that helps folks that wouldn’t otherwise have associated with someone with a disability realize “You know what? Any preconceived notion I had isn’t right. They are just like me in every way. They eat breath bleed.” We are all human beings, so I think in many ways that is what has changed. You see a lot more folks with disabilities in television and in the movies. Disability is becoming commonplace. Have we gotten as far as I would like to see yet? No, but we are working on it. I expect it will.
Jess: One thing I have seen with the research, certainly the research that has come out of our funding agency, is the shift from talking about disability in terms of not inability and in terms of clinical presentation and what’s called the medical model, and instead talking about how the person interacts with their environment and how the environment impacts their ability to interact, so the environmental model. Part of that has to do with visibility. People with disabilities are now out in the community, in school, at hotels, in businesses so we now have to talk about how do the barriers in place, what effect do they have and how can we remove them? How is an organization improved by simply bringing people of diverse abilities in. And the fact that we are using terms like inclusion and diversity instead of symptom and function, I think that has made a huge difference in the lives of people with disabilities. I hope so, at least observationally.
Arielle: Last main question for both of you is do you think that things are going in a positive or a negative direction today for people with disabilities.
Jess: I would say both.
Jess: Yes, I think the changes in our current climate, both the actual climate and political climate, are influencing my answer there. There has been so much progress and I think we are headed in the right direction in so many ways. I think we have some outmoded ideas and attitudes that need to be finally put away because they keep creeping up and pulling some things back, things like the idea of sheltered workshops, minimal pay, nursing homes, health insurance and healthcare especially. Those I see pulling back on some of those improvements myself. How about you, Mark:
Mark: I would answer this quite differently two years ago than I might today. And first, do realize that you are hearing from one of the all-time open-minded optimists, so I am always going to feel like it’s going positive one way or another. And I think, you know, the genie is out of the bottle. You might have some people who are trying to stuff it back in or don’t see things but that’s not going to change the tide. It might slow the tide down a little bit but it’s still going to continue forward. For one thing, folks with disabilities and people who are associating with them, again, it’s a growing minority. This country, in another thirty or forty years, I would like to believe, is going to be a group of all minorities. There is not going to be a majority. Part of that is folks with disabilities are going to be one of the many minorities that are running, helping this political climate move forward and helping everybody move forward. Still positive!
Zoe: Do either of you have any final thoughts or would like to share any other skills you need for your job?
Jess: I think the biggest skill that I need for my job is just the ability to listen and understand. Sometimes, people call us and all they are looking for is someone to hear the issues that they are having, but really it’s about listening to understand what their needs are and responding with the right pieces of information and the right contact. Whether you want to call that active listening, listening for content, or listening to the goal, I think that is a powerful skill for any librarian to have, especially the ones at the reference desk or answering the phone.
Mark: Well first, I want to thank you for this opportunity to talk about NARIC and some of the pieces here and it leads me into something that, actually Jess, neither of us quite mentioned but the role that technology has played in this and the opportunity you have with the podcast. My goodness, just a few years ago, no one had any idea what a podcast was, let alone the ability to quickly reach a lot of folks out there so the technology is also on the side of people with disabilities because it is making things that much easier when designed the right way. Sometimes, you have to go back and retrofit some things, but generally, I think technology and folks with disabilities are embracing it and taking ahold of it very quickly to their advantage. They are going to make it work for them. They realize what an opportunity it is. It’s neat to see.
Jess: Yeah, I agree with that.
Arielle: Well thank you to both of you for your time and your invaluable perspectives.
Jess: Thank you.
Mark: Thank you for having us.
Jess: Much appreciated.
Mark: Look forward to hearing it and telling all my friends.

On Being a Disabled Introvert and the Follies of Social Skills Training

In my earliest childhood memory, I am standing in a room that is not in my home. I remember hearing the words “San Diego,” one of my parents handing me a piece of banana and then walking away. I was likely younger than 2 at this point. I remember the words “San Diego,” the taste of the banana, but most of all, what I remember was the sense of peace I felt standing alone for just a moment, with nobody talking to me, touching me, or trying to engage my attention. My parent was near, but I was alone in my little space, and it felt glorious.

Several of my favorite other early-childhood memories involve the joy and peace I felt spending hours in my bedroom listening to music, lying quietly with my thoughts, and when I got old enough, reading. I am told that in my toddlerhood, when I heard the doorbell ring or discovered that someone was visiting our home, I would head off to the quiet of my bedroom. This behavior deeply concerned my teachers at the local blindness agency where I received early intervention services. They were worried about my socioemotional development. But in relaying this story, my dad-a smart, funny, loving man who just happens to be an introvert-told me he understood

When nondisabled children prefer quiet activities or have quirky interests, they might be considered a little odd or unusual, and adults might make a few attempts to encourage them to be more social, but usually it’s accepted that this is part of who they are. In contrast, when disabled children display any kind of social behavior that deviates from the developmental charts, alarm bells sound, and often an entire team of adults swoops in to try to save these children from social isolation. As my fellow blind blogger, Meagan Howell, writes (full post is linked at the end):

…my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it. Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready.

Most disabilities are perceived as social liabilities, and this perception has a kernel of truth-disabled people of all ages are more likely to encounter abuse, bullying, and exclusion than their nondisabled peers. In addition, certain disabilities can change the ways in which children develop social skills. For example, children with sensory disabilities may not be able to directly observe all aspects of other people’s social behavior. And, one common feature of autism (according to autistic self-advocates) is “difficulties in understanding or expressing typical social interaction.”

While it is true that disabilities can alter the process of social development, prevailing beliefs about how to intervene are often based on problematic assumptions. Social “deficits” are often expected in disabled children, and the popular solution for these “deficits” involves top-down instruction from nondisabled educators. “Social skills training” is considered a part of the “Expanded Core Curriculum” in instruction of blind children, and is popularized in the education of autistic children as well. All too often, well-intentioned social skills programs for disabled children continue to perpetuate long-lived power imbalances and societal prejudices. For example, when rooted in a culture that values extroversion, social skills programs may ignore and devalue the needs of introverts like myself and Meagan. More insidious, “social skills training” is often code for “compliance training,” where the hidden curriculum involves teaching a disabled child to comply with nondisabled norms in order to be accepted. Rather than instilling competence, confidence and well-being, inherently compliance-based instructional approaches can instead instill shame, insecurity, or self-loathing, as children may feel compelled to censor a part of themselves in order to be accepted by others.

So then, is there a better way?

In parent support groups, parents of disabled children sometimes voice concerns about their kids preferring to interact only with adults, or to play by themselves for hours with a single object, instead of interacting with their peers. I tell these parents that traditional children’s play activities are often rife with accessibility barriers. Solitary activities, that a child invents and directs, are fully accessible by design. I remind parents that adult interaction partners tend to be more predictable and more accommodating of access needs than other young children. Thus, a disabled child’s “socially inappropriate” behaviors may be highly adaptive. Furthermore, for autistic people (of all ages), “special interests” may serve as a primal source of joy. It is fascinating that the same deep, passionate focus derided in the autism intervention world as “perseverative” or “obsessive” is rewarded in the academic world with grants and tenure. As Julia Bascom, executive director of the Autistic Self-Advocacy Network, writes (full post is linked at the end):

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

There are several things we can do to support disabled children’s social development. We can begin by understanding that social connection means something different to every individual, and instead of following a one-size-fits-all curriculum, we can try to understand and support a particular child’s social goals, knowing that these might change throughout the child’s life. We can follow the child’s lead in identifying playgroups and other natural friend-making opportunities based around their interests. We can work to ensure that play settings are fully accessible and that there is a choice of activities. We can introduce disabled children to a variety of role models, both disabled and not, who can demonstrate the social skills that really matter for healthy relationships: things like sharing, empathy, and trust. We can provide guidance beforehand, and feedback after, a challenging social situation. We can support the child’s natural social learning process so they can develop the connections that matter most to them, while accepting them for who they are.

As for me, my interest in relationships (both platonic and romantic) kicked up a few notches when I hit puberty. Today I am happily married, have a small group of great friends, have good relationships with my family, and feel comfortable teaching and leading others. What I learned about socialization didn’t come from blindness professionals or from a book. I did what the blindness professionals said I couldn’t do: I learned by observation. As a quiet person, I learned by listening to others interact, and adopting the social behaviors that fit me and my personality. At my core, I’m still an introvert, and I’m OK with that.

Related Reading:
“Go Play with your Friends!”
The Obsessive Joy of Autism
The Tyranny of Indistinguishability

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.

“We’re all a part of this movement”: Caitlin Wood speaks about disability justice at the Women’s March

Last weekend, millions of people participated in “women’s marches” around the world. As was the case last year, gender justice was just one of the many concerns on the minds of the participants. On this week’s blog, I want to share powerful words from Caitlin Wood, a disability writer and activist who had the opportunity to address the crowd in Fayetteville, Arkansas. Caitlin teaches us about the concept of disability justice and the imperative for all justice-conscious people to consider the intersections between disability, race, class, gender, sexuality, and other identities as we work for change.

Hello. My name is Caitlin Wood. Thank y’all for coming out today. Thank you to the organizers for having me and for prioritizing the voices of those of us who live our lives on the margins. Thank you Blanca, Autumn and Olivia for ensuring our march is accessible to everyone, and for understanding access is a fundamental justice issue. Listening to our disabled sisters and recognizing the value of our expertise and what we bring to the table is a justice issue. So often, even in social justice circles and events, disabled people are excluded, ignored, or treated as an afterthought. It’s rare we’re thought of at all. It’s even more of a rarity for a disabled woman to have the opportunity to speak her truth into a microphone to a crowd as large as this one. It’s an opportunity I don’t take lightly. So in solidarity and with gratitude to everyone here today, I say thank you.
Disabled people are the largest minority group in the world. We are 15% of the entire population. We are everywhere and yet somehow invisible. We are consistently and routinely missing from conversations about equity and oppression. This is one of the many cruel injustices rendered by ableism.
Many people I talk to have never heard the term. When I speak about ableism, I’m referring to the systemic oppression of disabled people. Ableism, like all types of oppression plays out in many forms. It is overt and covert, macro and micro. It reveals itself in attitudes and beliefs, language and behaviors, and in government policies.
Ableism tells us that to be disabled is, at worst, tragic, deserving of pity, and at best, a personal flaw. That we’re defective in some way. It’s revealed in the avoidance of and heartbreakingly low expectations for disabled people. It’s the refusal to acknowledge and examine nondisabled privilege, and to validate disability as a legitimate identity, and diverse community. It’s telling me I shouldn’t refer to myself as disabled while being unaware that I use that word with precise intent and pride. It’s being taught disabled people must somehow “overcome” our disability in order to be accepted and valued. Instead of being taught to embrace and celebrate this part of ourselves, we’re supposed to hide it, diminish it; to feel shame about our minds and bodies. We are expected to stay silent about our inequities. We are expected to accept the myths of normalcy and independence as fact. We are expected to apologize for our existence. While this is true for all of us, it is especially true for disabled people of color.
Ableism is evident in the disturbingly high rates of sexual violence we experience -7x the rate of nondisabled people if you are intellectually disabled. And this doesn’t take into account those who’ve been institutionalized. There, the rate is higher. It is our erasure from history, and our erasure from the present. It’s our omission from the media and our exclusion from all social spaces. It’s barriers preventing disabled people from accessing a building, a march route or using a bathroom. It’s the callous indifference and dismissal we encounter when we bring up these inequities. It’s devastating cuts to mental health services and targeted assaults on health care. It’s the fact that If I weren’t here today speaking about this into a mic, many would go home from this incredible march never realizing anything was missing. It’s the mass incarceration of disabled people, extreme levels of police brutality and the school to prison pipeline, all of which disproportionately harm disabled people of color, particularly those with invisible disabilities and mental illness.
If you come away from this remembering only one thing, let it be this: *Ableism intersects with, and facilitates literally every oppression possible*. It is gendered, racialized and intrinsically entwined with class. It has been and is used to pathologize black and brown bodies, justify the forced sterilization of women, and classify being transgender as a psychiatric disorder by the American Psychological Association.
We can no longer exclude ableism from conversations around justice and equity. By refusing to acknowledge and validate the importance of disability identity and the divergent experiences it provides, we perpetuate oppression. We repeat our previous mistakes. We operate with an incomplete analysis and miss the opportunity for real change.
We must take an honest inventory of our ableism, with the understanding that while it’s often an uncomfortable challenge to our egos, it’s an integral component of progress.
In the words of black queer writer, Son of Baldwin, “If dismantling ableism isn’t a part of our social justice platforms, then our platforms are suspect.” It is imperative to integrate dismantling ableism into our frameworks of justice. It is essential that disabled people aren’t included simply as a token gesture, but as respected leaders, directing conversations and actions around this topic. We are the experts on our own lives. And we have been fighting for years to defeat our invisibility.
We must redefine as a culture how we view disability itself. We must take the effects of ableism and nondisabled privilege seriously. We must continue to educate ourselves and each other. There are many amazing activists to learn from, particularly disabled people of color who are leading the disability justice movement through compelling art, writing and performance. Leroy Moore and Patty Berne of Sins Invalid, Alice Wong of the Disability Visibility Project, and activist Mia Mingus are just several I admire.
We’re all a part of this movement. For some, marches and crowded events are simply not an accessible option. All avenues of resistance are valuable. All contributions, whether podcasts, letter writing, phone calls, protesting at politicians offices and online marches- are all part of the work. To my disabled family both known and unknown: When ableism lies to you and tries to convince you otherwise, remember: you are powerful. You are valuable. You are important. You matter. Tell your truth. The movement can’t succeed without you. Thank you.

Caitlin Wood is editor of Criptiques, an anthology of writings by disabled people. Learn more at

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,