#HandsOffMyADA: Disabled Activists Grieve Passage of HR 620

Last April, I blogged briefly about the ADA Education and Reform Act of 2017, also known as HR 620. Yesterday, this law passed the House of Representatives by a vote of 225 to 192.

The ADA was passed more than 27 years ago to protect disabled people’s right to participate in all aspects of public life. The ADA requires that all entities serving the public make their facilities, communications, and operating procedures accessible. Business owners have now had more than 27 years to learn about the ADA and to make necessary modifications, and ample technical guidance exists.

HR 620 weakens the enforceability of the ADA by placing a greater burden of proof on individuals filing complaints. It would require individuals to give a noncompliant business written notice of an ADA violation that details the specific section of the ADA being violated, wait 60 days for the complaint to be acknowledged, and then wait another 60 days for the access violation to be resolved before legal action can be taken. In some cases, a business can avoid litigation by claiming that they have made “substantial progress” toward removing an access barrier, without removing the barrier altogether.

A disabled college student can’t wait four months for a course using inaccessible software to be fixed. A wheelchair user who can’t access a social clubhouse with stairs doesn’t have four months to wait to be included in a meaningful social activity. A working-class American who was denied a job due to disability discrimination doesn’t have four months to wait for a paycheck.

But what concerns me most of all about this bill is the increased burden of proof it places on disabled people to identify and detail accessibility barriers. The purpose of the ADA was to make access a human right. Disability is a thing that affects all of us, directly or indirectly, and access should be a collaborative process between businesses and customers. Businesses should be incentivized to build access and universal design into their operations from the ground up. Instead, HR 620 may encourage businesses to ignore access considerations until a specific individual files a detailed complaint, and then take their time implementing a fix. The entire tone of the legislation seats disability as a problem residing in an individual, rather than inclusion as a right that ends up benefiting the entire community, including the businesses themselves.

I had an exceptionally busy workweek, so I spent less time than usual on social media. But when I did log on, I saw disappointment, sadness, and worry in the posts from my disability activist friends. I saw posts from individuals who came of age before the ADA was passed, and who worry that we are sliding backward into that pre-ADA era. I saw posts from younger people wondering if their own battles for access to courses and jobs might become even more challenging as a result of this bill. I saw disability activists of all ages, races, creeds, and socioeconomic backgrounds feel that their disabled identities were devalued and dismissed by the narrow Congressional majority who passed the bill.

We have lost a battle, but we have not lost the war. As of yet, there is no companion bill being considered in the Senate, and a companion bill must pass the Senate before the ADA Education and Reform Act has a shot at becoming law. We must stay vigilant, and we must make it clear to our elected officials that access is a universal human right.
Find out how your rep voted on HR 620

The Superhero Hangs Up Her Cape [Reprint]

“Treating disabled people like superheroes allows organizations like Inclusion Alliance to ignore the discrimination faced by people with disabilities, such as the payment of subminimum wages to disabled workers and the inability of many blind college students to gain accessible materials for their education. The superhero mentality surrounding independent disabled people is holding back true and meaningful change.”

Most people enjoy winning contests and getting trophies. But for disabled people, an award can be a mixed blessing. In this article from the NFB Braille Monitor, Sophie Trist contrasts her experiences receiving two awards. One, a second-place Braille Challenge trophy, was one she earned as a child for winning a braille reading contest. The other, an “Adult Spirit Award,” was one she received merely for being a college student who is blind. Through this contrast she reflects on the complex feelings associated with getting accolades when one is disabled, and the struggle to determine whether or not those accolades are deserved.
The Superhero Hangs Up Her Cape

For JDAIM: Reflecting on my Jewish disability experience

I started my consulting career doing some training work with the Union for Reform Judaism and the Foundation for Jewish Camp. Since February is designated as Jewish Disability Awareness and Inclusion Month (JDAIM), I thought this week might be a good time to reflect on what I’ve learned about juggling multiple minority identities as a person who is both Jewish and disabled

I like to self-identify as being “blind and Jewish since birth” since I consider both identities to be integral to my being throughout my life. Both identities are statistically rare: in the United States where I live, less than 1% of Americans identify as blind, and about 2% of Americans identify as Jewish. Judaism isn’t just a religion; it encompasses a rich culture and community. Disability, too, constitutes a source of cultural identity and community belonging for many of us.

I was fortunate to be involved in both communities while growing up. For the most part, I was included in both communities. I had an accessible Hebrew school experience and a Bat Mitzvah similar to that of my peers. In the blindness community, I never encountered any real anti-Semitism. However, there were a few times when one of my identities led to feelings of isolation in the other group.

For example, when I was attending a youth weekend retreat for Jewish teens once, they took us to an arcade. Between go-carts, bumper cars, video games and laser tag, most modern arcades may as well have a sign saying “blind people need not enter.” I spent most of the night chatting with the adult group leader, who was very gracious, but not something any 14-year-old really wants to do. I was in a group of my fellow Jews, but was isolated by an environment that didn’t accommodate my disability.

Another time, I went to an event put on by the local agency for blind children just before Easter. We were offered a choice between decorating Easter eggs and learning how to make egg salad. Because Jews don’t celebrate Easter, I had no interest in decorating eggs, and I liked to cook, so I chose the egg salad option. I did not realize that I was the only child choosing not to decorate eggs. Again, the result was unintentional separation from my peers, who shared my blindness, because I was Jewish.

In the presence of fellow Jews, I often felt hyper-aware of my differentness as a visibly disabled person. And in the presence of my fellow disabled people, I often felt hyper-aware of my differentness as a Jew. I was always excited to meet others at the intersection (blind Jews), but they were few and scattered. Consequently, especially during my teen years, I began to feel like I was a member of two important but mutually exclusive communities, which seemed to be pulling my identity in opposing directions. To complicate things further, all of my family members were Jewish, but none of them were blind. As a teenager going through the typical developmental process of distinguishing myself from family, I found myself feeling pulled further toward the blind community. I also encountered much more frequent discrimination due to my disabled identity than I did due to my Jewish identity, so I stuck close to my blind and disabled peers in self-defense. But my sense of identity and belonging in the Jewish community suffered.

Working in the Jewish disability inclusion world has been a transformative experience for me. Over the last three years I have met national Jewish leaders who Saw inclusion as an imperative, not just for the benefit of disabled Jews, but for the benefit of the community as a whole. I met colleagues who valued my expertise as a disabled person and involved me in the process of making change, and this catalyzed a personal healing process. I began to recognize my Jewish and disabled identities as complementary rather than oppositional, and to integrate both of them into my being.
Regarding JDAIM, my colleague Lisa Handelman from the Jewish Federation of Greater Washington writes:

As a society, we strive to shift from a focus on kindness to a demand for justice; from the idea that inclusion is about helping others to the knowledge that it is about strengthening the collective; from creating particular programs to making all opportunities accessible.

These words ought to serve as a model, not only for all religious communities, but for all communities bound by cultural, historical, and civic ties. At the same time, disability communities have a duty to recognize the diverse racial, ethnic, religious, sexual, gender and other identities of their members, and how those identities interact with the disability experience to shape their lives.

To hear more on my experience and the challenges of balancing ethnic and disability ties, check out my webinar on the magic of disability communities
Click here to learn more about JDAIM

“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

Dark Humor, Disability, and Community Coping [Reblog]

“If we don’t laugh, we’ll cry. So why not laugh? It may not be funny now, but it will be one day. I think. I hope, because sometimes, hope is all we have.”

A few years ago, I was having dinner with two of my blind friends. We started trading stories of times when we struggled to use basic amenities while staying in hotel rooms alone. Struggling to distinguish between the regular and decaf coffee without reading the labels, or to find the climate controls (which were conveniently on the far opposite side of the room from the air vents). I shared the story of the time I was staying at Gallaudet University, and I couldn’t figure out why I could hear nothing on the TV but static. I called for help, only to be told that I’d accidentally placed the television in a silent mode for deaf viewers. Another time, a power outlet in my hotel room appeared to be broken, and after several days and having an electrician look at it, it turned out that the outlet only worked when the room lights were turned on-and as a blind person I’d missed that fact.

As my friends and I shared these stories, we began to laugh. One person would laugh, which would make the next person laugh harder, and so on. When I finally caught my breath, I thought about how a bystander probably would have no idea why we were laughing so hard about bumbling around in a dark hotel room trying to use the TV or the hair dryer. My husband would probably only somewhat get the joke. To most uninitiated sighted people, the situation would be sad or strange, but to us it was hilarious.

But what happens when a disability-related situation is more than just an inconvenience? What about the times when we encounter discrimination, hostility, abuse, extreme physical pain, a threat to our survival?

As this blogger suggests, it may be in the most serious disability-related situations when it is most imperative to laugh. Because if we don’t laugh, we’ll cry instead. And through laughter we can find hope.

Further, the humor that disabled people share with one another is borne out of our shared experiences. It arose out of segregation and is often a backlash against a world that tends to exclude us even today. Knowing I have a community who will laugh with me when I face discrimination gives me the confidence to keep trying.

Dark Humor, Disability, and Community Coping