#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

“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

Disability Wisdom Winter 2017 Update!

As 2017 draws to a close, I’d like to share some exciting projects that I’ve been doing with Disability Wisdom Consulting. I publish a quarterly update newsletter to highlight ongoing projects and also to share some resources that might interest readers of this blog. Please feel free to share the below newsletter in your networks.

Dear friends and colleagues:
As always, thank you for supporting Disability Wisdom Consulting. As we come to the end of another year, I want to take this time to share a few updates and resources that you might find interesting. Please feel free to share broadly.

Research Highlights:
Adult Rehabilitation and Employment Survey Series:
Over the past 18 months, I’ve been honored to work with Dr. Edward Bell and Mary Ann Mendez at the Professional Development and Research Institute on Blindness (PDRIB) on a research project. We began by collecting demographic and employment data from a group of about 1,000 blind adults in the United States to look at current employment patterns and factors that were associated with employment. Results from this initial survey replicate previous findings: about one-third of the blind adults who have completed vocational rehabilitation (VR) are employed full-time, with about 20% working in self-employed or part-time positions. Many of these individuals, though employed, are still not earning enough to leave the Social Security Disability rolls. Consistent with past research, we found that having more formal education, using braille on a regular basis, and being a member of a blindness consumer organization were correlated with employment. We also found that individuals who were blind with additional disabilities reported lower employment rates and likely face additional barriers in the workplace. We will be submitting these results to the Journal of Blindness Innovation and Research (JBIR), a peer-reviewed, open-access journal dedicated to publishing scholarly discourse on blindness. Learn about the journal here.
We are continuing this project with four follow-up surveys to ask blind adults in the United States for more in-depth feedback on their experiences with employment, parenting, training and rehabilitation, and psychosocial issues. These surveys are unique in that they include both closed-ended and open-ended questions to describe trends as well as to gather more subjective input from blind individuals regarding barriers and facilitators to participation. It is also unique in that all three people on the research team are blind, and we have incorporated our lived experiences into the design of the survey questions.
The results from the employment and parenting surveys are being compiled and prepared for publication at this time, while the other two surveys are still ongoing. I will provide updates as the results from these surveys are published.

The Impact of Blindness Simulations:
Last summer, I gave a brief talk at the 2017 National Organization of Parents of Blind Children (NOPBC) conference describing my earlier research on blindness simulations. I explain the social-psychological theories underlying this work and a few anecdotes from experiments we conducted to test the impact of simulating blindness on sighted college students’ attitudes and beliefs about blindness. A transcript of my talk was recently published in the NOPBC’s quarterly magazine. Click here to read a transcript of my talk.

Training Highlights:
Tips for Making Images Accessible on Social Media:
Sharing pictures on the Web and social media is easier than ever. When you share pictures of your loved ones, or a digital flyer for your next event, be sure your blind followers aren’t left out of the fun. Check out this blog postto help take the mystery out of image descriptions.

Disability Inclusion Planning Toolkit:
I recently joined the inclusion committee for the Jewish Federation of Greater Washington. They have created an excellent inclusion toolkit that organizations can use to evaluate their inclusion and accessibility. The toolkit contains printable discussion guides, as well as interactive self-assessment tools. Although it was originally created for synagogues, it can be useful to any organization serving the public. The inclusion tool is free and available to the public. Learn more about the inclusion tool here.

Knowledge Translation Highlights:
Research in Focus Series:
I write a weekly column called Research in Focus for the National Rehabilitation Information Center (NARIC) website. Each Research in Focus article is a reader-friendly summary of a recent disability-related study. In this newsletter, I want to highlight two recent Research in Focus articles that I found particularly interesting. The first highlighted results of a coaching program to empower youth receiving “wraparound” behavioral health services. The coaching helped the youth participate more actively in their team meetings, making the meetings a more positive experience for all involved. Principles from this coaching program could be applied to youth participating in education or transition planning as well. Read about wraparound coaching here
A second Research in Focus article highlights data from young adults who are deaf-blind. This population is small and has not been well-studied. The results show that young adults whose parents expected them to find jobs were more likely to find jobs than those whose parents did not. This pattern was especially strong when the deaf-blind adult had other disabilities as well. While this isn’t a surprising finding, it shows that parents can make a real difference in their children’s futures, even (and especially) when the children have complex disabilities. Read about the power of high parental expectations here

Website and Blog Highlights
Check out some recent blog posts:
Learn about the ABCs of good disability awareness, what would really make life with disability better, the benefits of gratitude,and a letter I wrote to my teenage self.

Join the Disability Wisdom Discussion Group on Facebook!
The Disability Wisdom Discussion Group now has over a thousand members from around the world. This group is open to people with disabilities, as well as those who work in the disability field, or who have loved ones with disabilities. Click here to join the group
Until next time,

Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: arielle@disabilitywisdom.com
Web: www.disabilitywisdom.com
Facebook: www.facebook.com/DisabilityWisdom
Twitter: @DisabilityWise

Reaping the Benefits of Gratitude

As a justice-conscious American, I am troubled by the historical roots of the Thanksgiving holiday as a celebration of conquest. But I enjoy some of the modern traditions that have become associated with the holiday: a few days off from work or school, a chance to spend time with loved ones, good food, and the deliberate practice of “thanksgiving”; taking time to think of things we appreciate in our lives.

As disabled people, gratitude can sometimes be hard to find. We may encounter frequent circumstances that make us sad, angry, frustrated, fearful, ashamed, or worried. Some of us may be overwhelmed by physical discomfort or emotional trauma. We may face food or housing insecurity, or feel disconnected from our communities. Amid such struggles, it may be difficult to bring to mind the positives in our lives.

Yet research indicates that making the effort to identify sources of gratitude has a myriad of physical and emotional benefits. In a classic study (links to PDF) college students who were randomly assigned to keep daily or weekly “gratitude journals” reported more positive moods, felt happier about how their lives were going, were more likely to report helping others, and were more optimistic about the future compared with others who wrote about neutral topics. In a follow-up study, the researchers randomly assigned some individuals with neuromuscular disease to write daily gratitude journals. These individuals were not only happier than those who were not assigned to keep gratitude journals, but they also reported getting more sleep each night and feeling more connected to others. In another study,people with chronic pain who reported feeling more gratitude in their everyday lives experienced less symptoms of depression and anxiety, and also reported better sleep than those with less frequent experiences of gratitude.

Negative thoughts and feelings are a bit like gum on the bottom of your shoe; once it’s there, it sticks, and is difficult to scrape away. But gratitude can disrupt negative mind cycles, and if practiced enough, can become a cycle of its own. In fact, some research suggeststhat gratitude can trigger the release of “feel-good” brain chemicals like dopamine and serotonin, which can motivate us to keep looking out for things that make us grateful.

Before I close with some suggestions to start your gratitude journal, I want to address two caveats when we talk about gratitude in the disability community. First, disabled people are often expected to be grateful by others. For example, “You should be grateful when that man almost carried you across the street; he was just trying to help.” Or “don’t ask for that accommodation; you should be grateful to have a job here at all.” Coerced gratefulness doesn’t work; in order to confer benefits, gratitude needs to be natural and organic. Nor is gratefulness a reason to accept the status quo. We can be genuinely grateful for the things we do have, while at the same time, expecting and pushing for the things we deserve.

Second, the shadow side of being grateful for what we have is pitying others for not having those things. Disabled people often find ourselves unintended objects of nondisabled people’s gratitude. “That poor man in the wheelchair! I’m so grateful that I can walk,” someone might think, or even say aloud. “Thank God I’m not blind like you.” And so on. When we exercise gratitude, it can be tempting to compare ourselves to others who lack things we have as a means of boosting our own sense of gratefulness. But this may weaken the benefits. In fact, in one of the studies described earlier, some college students were asked to write about things they had that others don’t have, instead of writing about things they were grateful for. The students who compared themselves to others did not report the same boost in happiness and optimism as the students who wrote about sources of gratitude. It is possible to fully experience appreciation for what we have in the present, without comparing ourselves to anyone else. We can be grateful, while also humbling ourselves with an awareness of our privilege and a commitment to share what we do have with others whenever we can.

When you’re getting started with a gratitude list, sometimes the simplest things can be most compelling. For example, you might be grateful for:

  • A special connection with a significant other, family member, or friend, even just one person;
  • Access to conveniences like electricity and running water;
  • The beauties of nature, the warmth of the sun, a rainbow or a sunset, the birds chirping, fresh air or ocean smells;
  • A connection with God or faith;
  • A period of good physical or mental health, which could be as long as a decade, or as short as an hour;
  • A special mentor from childhood, perhaps just one person, perhaps many;
  • An experience where you were included and valued, or an experience of access intimacy;
  • Try converting a negative situation into a gratitude exercise. For example, if you are annoyed or stressed by a situation at work, try to focus on your gratitude for having a job, and for all the things (education, mentors, resources) that helped you become employed.

This November, I am grateful for the opportunity to improve public understandings of disability through Disability Wisdom Consulting. I am grateful to everyone who has helped make Disability Wisdom a possibility. Most of all, I am deeply grateful to be part of an international disability community, to know that I am not alone in my disability experience, and to have the chance to empower others. Happy Thanksgiving to all.

Disability Wisdom Fall 2017 Update!

It’s been a little over six months since this website was launched. When the website was launched, I started sending out an E-newsletter to my professional and personal contacts every three months describing what Disability Wisdom has been up to. The newsletter isn’t a full listing of projects that I work on with Disability Wisdom, but just highlights a few notable research, training and knowledge translation projects. I try to share a few free publications as well.

Below is the Fall 2017 Disability Wisdom newsletter. My apologies to those of you who have already gotten this in your inbox, but I wanted to make it available to other blog readers who haven’t yet subscribed, and those of you who are reading my website for the first time. Please share a link to this post, or copies of the free downloadable publications, with anyone who might be interested.
Email meif you’d like to receive the quarterly newsletters in your inbox.

For further updates, be sure to follow Disability Wisdom on Facebookand twitteror join the Disability Wisdom Discussion Group.
Enjoy, and thanks for reading!

Dear friends and colleagues:
Thank you for supporting Disability Wisdom Consulting. It’s been a pleasure to spend my days learning and teaching about the disability experience, and getting to work with so many dynamic people who are dedicated to making our world a more inclusive place. Below are some quick updates on projects I’ve been working on during the last three months, along with two resources you may wish to share with your networks.

Research Highlights
Exploring Social Assistive Technology Preferences:
This year, I’ve had the pleasure of working with the Center for Cognitive Ubiquitous Computing(CUbiC) at Arizona State University. CUbiC is developing haptic aids that could help convey information in an accessible way to users who are blind or visually impaired, including information about their own nonverbal signals and mannerisms during a conversation. Working with CUbiC, I surveyed 77 adults who have been blind since birth to find out what strengths and challenges they experience with nonverbal communication, as well as their feelings about using a haptic aid for social interaction. We hope to publish the findings soon, and will share a summary with you at that time. We also hope to get additional feedback from the 300 individuals who agreed to participate in future studies with us.
Are you interested in using survey tools to get input from people with disabilities? I can work with you to design, program, launch and analyze surveys customized to your needs and goals. Contact me for more information or to set up a meeting!

Training Highlights
Top Ten Tips for Inclusion:
I started out as an inclusion trainer when I was invited to develop some content for the Union for Reform Judaism’s Disabilities Inclusion Learning Centerthree years ago. Over the past few months, I’ve had a wonderful opportunity to continue working in the Jewish community with URJ and with Hillel International,the “foundation for Jewish campus life.” Hillel recently asked me to build a “top ten list” of inclusion tips that any organization can implement to promote inclusion into all aspects of its work. Here is the Top Ten sheet that we developed. The tips begin by addressing person-to-person interactions, and then progress to the organizational level. On the second page of this double-sided handout, you will find links to some of the largest disability advocacy and support organizations in the United States, which can help answer questions about disability-specific issues. Feel free to share the attached resource broadly.
Top Ten Inclusion Tips

Knowledge Translation Highlights
New Fact Sheet: How to Make Healthcare Accessible for All
I wrote this fact sheet for the Rehabilitation Research and Training Center on Aging with a Physical Disability at the University of Washington. Written for healthcare providers, it highlights the most common access barriers that disabled patients may face in the healthcare setting, and practical ways to remove them. Read the fact sheet here:
How to Make Healthcare Accessible for All

Website and Blog Highlights
Check out the Disability Wisdom Logo!
Disability Wisdom has a new logo! You can see it in the banner on this blog.
(Picture description: stylized picture of a head with feathers or spikes (depending on your interpretation) extending in all directions in a rainbow color pattern, with the words “Disability Wisdom Consulting” below the head, and the braille letters “dw” at the bottom.)

Blog Update:
Check out some recent blog posts: Learn how Disability Wisdom got its name, read about controversies around “curing” disabilityand links to some excellent articles on disability issues.
Want to subscribe to the blog? Click the “follow” icon in the lower right of the screen (link labeled “follow” for screen reader users), or email meat Arielle@disabilitywisdom.com to be subscribed by email.
Until next time,
Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: Arielle@disabilitywisdom.com
Web: www.disabilitywisdom.com