Making Waves: Members Meeting Recap
By Nick Adjami
February 2, 2022
Thanks to all who made waves with us last week at our virtual members meeting. We were thrilled to have your company as we presented awards to three exceptional ERC members and heard captivating remarks from local disability rights activist Noor Pervez. We’ve compiled highlights from the event here for those who couldn’t attend, or for attendees who’d like a second look.
Advocates for Change
In 2019, two sisters bravely came forward to report their former landlord for sexual harassment. Over the next two years, they persevered through an emotionally draining complaint process and ultimately succeeded in obtaining a meaningful settlement agreement. We presented them with Advocate for Change awards in recognition of their courage and dedication. The sisters commented, “It feels good to know that, by standing up for ourselves, we’ve helped our community too.”
Impact for Equality
For 50 years, employment economist Dr. Marc Bendick, Jr. has worked to improve employment opportunities for workers traditionally disfavored in the mainstream American labor market. Marc helped to design the Fair Employment Council’s (one of the ERC’s predecessors) very first employment tests in the 1990s and has since remained a steadfast supporter and collaborator. We were honored to present him with the Impact for Equality award in recognition of his accomplishments. Marc commented, “I am pleased to accept this award, less as an acknowledgement of past successes than as a talisman for the work that remains.”
P.S. You can make a donation to the ERC in honor of our awardees. Follow this link to help us celebrate their remarkable achievements.
“You Are the One Who Can Make You Proud” Keynote
Noor Pervez is a local educator and organizer who focuses on the intersections of disability, race, gender identity, sexuality, and religion. Noor also happens to be a client of the ERC: last year we helped him to successfully lobby his apartment building to install an ADA-compliant ramp. Noor spoke about the relationship between self-advocates and the community, and how both work together to advance progress. Re-watch his remarks below. The full transcript is provided beneath the video.
Remember, you weren’t the one who made you ashamed, but you are the one who can make you proud. When I reflect on where my life path took me, to here, to work for the disability community, to friends and community over and over again, I always return to the question Laura Hershey raises of how pride and shame are both inherited. As a kid, I was always known for being relentless. I was the debate kid up at midnight writing speeches. I was the one gunning to read a hundred books every summer, and at a surface level I was trying to take pride in what I could do, but in practice I was putting that much effort in because I was given so much shame about who I was.
I always joke that when I started in activism at age 11, I first ran for middle school student council. I trailed into civil rights activism in high school and into a role as a policy officer for an LGBT advocacy group in college. I went from student groups to working on policy. And today, that legacy is where I learned that grassroots community organizing and the skill set it gave me got me my current job.
I don’t tell you this to say that I’m somehow special. I’m telling you this because it is in fact the exact opposite. My skill sets, and effectively everything I’ve ever done, are things that I owe to people who helped me survive. I couldn’t have been a queer activist while living with transphobic family without the friend of a friend that smuggled me out to college, driving me there daily for nearly a full year until I saved up enough from my on-campus job and internships and had enough to pay rent every month. I couldn’t fight for a more accessible society if I wasn’t living in one of the regions most directly improved by the ADA in terms of infrastructure. My life didn’t end when I became more disabled, in fact, I learned a lot more. I’m a better activist for the lessons learned from my community members. Like Laura Hershey asked, I practiced and I got proud.
It’s part of why being multiply disabled scares most people who meet me the first time. People have been taught that I’m supposed to shrink, to be smaller, more grateful for access when I find it, but I’ve never been one to accept my odds. Too many people have put too much work into keeping me alive for me to just sit down and shut up. My job isn’t only surviving. There’s honor in that absolutely, but what I’ve learned is that to get past survival and into thriving, it takes building relationships and leveraging the power that you can build together.
If there’s one thing I’ve learned in my time as a grassroots organizer, it’s that it’s the job of our communities and allies to push for more availability and openings for self-advocacy and vice versa. Self-advocacy and community advocacy are inherently, inextricably interlinked. I’ve spent my whole life working along exactly this balance.
When I was doing grassroots activism for disability and LGBT justice at my North Texas college for instance, I was one of a large number of disabled students facing academic discrimination on the basis of disability. The process to get accommodations was inherently over-complicated, and it often required testing that was impossible to obtain if you didn’t have high quality insurance. And it was especially difficult if you weren’t able to drive, given that there was minimal public transit. There was effectively no way to get accommodations if you were poor. Students who did get accommodations also were often made to fight for basic things recommended by their medical teams. This is in addition to our college dorms being mostly inaccessible if you had a mobility device, and general incompetence from counseling and medical staff that were on the school’s payroll regarding disability.
When I ran into these barriers, I spoke up, but I was struggling. My physical and mental health were cracking under the stress of fighting while already dealing with work and school, and basic maintenance tasks like cooking and taking breaks were disappearing. And I was falling back into previous patterns with a lifelong eating disorder. My self-advocacy was at risk of becoming a lot less strong because my day-to-day needs could not be met while putting all of my energy into fighting for my education. That was when I started to better understand the role of community.
My friends made it a point to do everything in their power to make up for what needs the school did not fulfill. My first boyfriend took over teaching me how to cook and meal prep and he or others in my LGBT group would often help me prepare basic meals for the week or invite me over for dinner or lunch to make sure I got something in my stomach. Other student leaders connected me to tutoring and study services on campus that helped me practice my time management and accommodate my neurological disabilities as much as I reasonably could on my own. And when the discrimination from the school bled into the counseling center that was supposed to be helping me treat my eating disorder, my friends are the ones who helped me file complaints and took turns letting me break down in their dorms from the stress. Despite having every possible barrier thrust at me, I was never alone.
I learned very quickly that the only way out was through. My community taught me that my job was not only to fight for my own battles individually, but to support everyone as they fought back against those same structural problems. This was built both on the love we had for each other and also in strategy. Collective change can’t happen without self-advocacy and self-advocacy is inherently communal. It can’t happen without some amount of support somewhere, whether it be from real-life friends, stories left in oral or written histories, or another source of community hope that can be accessed even if you can’t connect with someone in real time.
The spirit of that lesson has been an ongoing part of my life. At 26, I have more privilege than I ever have. I have a stable income. I have medical equipment that makes it possible for me to leave my house with minimal pain. I am not struggling to pay rent. I have insurance, and like a cursed gift that keeps on giving, ableism and other structural discrimination has continued to be a daily occurrence. Now, it looks like fighting for disability justice and rights at a local and federal level as part of an autistic-led non-profit, pushing for disability inclusion in the DC queer scene, and most familiarly, it also means fighting for access in my own home.
Last year, I filed an accommodations request for my building to let me pay for an ADA-compliant ramp at the building’s back entrance. The front entrance, I should note, is completely inaccessible for a power chair user due to steps. After about six months of me checking in regularly with the apartment management company and getting no answer, and still daily risking injury on a slope that wasn’t designed to hold the weight of a power chair, I put out a call to my community asking how I could make this request move. A friend directed me to Susan over at the Equal Rights Center.
Susan was my advocate the whole time we worked through the ramp process. She helped me file complaints and navigate the settlement arrangement, which ultimately resulted in the building agreeing to pay for the ramp in exchange for them not admitting any fault, and me agreeing to not pursue further legal action. She also helped me as I navigated accessibility concerns in my living space and helped direct me to resources. Thanks to her help, I was able to continue the rest of my daily life including both activism at a broader level and basic self-care tasks with a lot less anxiety. I felt like I had someone in my corner who cared about making sure that my rights were being met. In a year when I felt more hesitant than ever about asking for help, I cannot emphasize enough how much of a relief it was to not have to handle this either alone, or while pulling from my immediate friends who are already struggling due to the pandemic.
When I say that self-advocacy and community advocacy are inherently impossible to do separately, this is part of what I mean. It’s what I would call the tire method. If you look at a tire moving the car along, only about a third of the tire can get squished at a time when it’s contacting the ground if you wanted to keep- if you want the car to keep going. You need one other third of that tire to be recovering from being squished and another third getting ready to be squished again as it falls under the weight of the car. Advocacy is a lot like that. It’s taking care of people after they put themselves through the mental, physical, emotional ringer to try and move themselves, and by extension everyone else dealing with the same problem, past it, and getting them ready for when they have to get put back on the spot again. And it’s rotating people out on all three fronts, so no one person gets too crushed. You can’t just have one part of the tire holding all of the weight permanently if you want to go anywhere.
Put more bluntly, the role of self and community advocacy has shown me that the tire method is not meant to last forever. You have to be able to go to a pit stop eventually so that everyone can catch a break and you can get some air in the tires. Or if metaphors aren’t your thing, you advocate for yourselves and your community or you all die.
Disability history has pulled this message to the forefront regularly, and it never leaves my mind. Our history is full of advocates. Lois Curtis and Elaine Wilson, two women living in an institution, decided to legally fight for the ability to live out in the community. With their work, along with the help of a legal team, they won their case. That Supreme Court case, Olmstead versus L.C., ruled that disabled people have a legal right to live in our communities. That victory marked a door opening that promised that disabled people have the legal right to be in our own homes, and by extension to do things like seek employment and to make our own choices about what our lives would be like. In an instant, society had to start thinking about disabled people as possibilities in their own communities, present at their churches, their grocery stores, their hospitals. These people that had been marked to spend our whole lives sectioned away from society, were suddenly a reality our neighbors had to begin to face. Advocacy also takes on forms like protests, such as the Capitol Crawl and the 504 Sit-ins, both of which demonstrated the inherent physical inaccessibility of society.
These acts of self-advocacy were and are also community advocacy, and they shifted the expectations we have for disabled people. It changed the world for peoples society as a whole had expected to live and die in a segregated setting, hidden away from non-disabled people, including in many cases our own families.
It was an uphill battle then. It’s still an uphill battle now. One being led by disabled people and supported by allies such as family members and people working in disability rights more broadly. It can feel like pushing a boulder up a hill. It can feel like that fall is inevitable, but yes, we do fight anyways, because it matters. Disabled people are still literally dying to be seen as worth being in society, as the pandemic has demonstrated over and over again. We need every tool we can get to break that down, and that includes your help.
The ramp built at my complex is not just a result of me or the Equal Rights Center. It’s the result of decades of activism from a class of people who put their lives on the line for themselves and each other to make sure that, down the line, the next generation would have a shot at freedom. I’m closer to that each day thanks to them. I live somewhere that is physically possible for most of my friends to visit. When I am struggling, I can get help without risking my safety. I don’t have to go through life alone. Please make no mistake, I owe that to them and so do many of you.
Disabled lives are worth living. Disabled lives are worth saving and prolonging. We are not expendable and we should never be treated as such. Please know that by doing the work you are, you play a part in proving that to people who otherwise wouldn’t believe that every day. You’re stakeholders in behaving as though our rights matter. So I remind you, even when people act like we don’t, especially when we’re treated as an inconvenience, you must act like we matter, like us having equal access matters. Because we do. Because it does.
And because your part in the ongoing exchange of self and community advocacy is vital. The Equal Rights Center is taking weight off the shoulders of exhausted disabled people everywhere. It is critical that work continues to be done. Take today to be proud, but please never forget, the shame people come to you with when dealing with access issues was given to them. They need the space to practice being proud. Encourage that, and continue to grow that practice. Remember, you weren’t the one who made you ashamed, but you are the one who can make you proud. Thank you.
If you believe you may have experienced discrimination in housing, you can contact the Equal Rights Center. To report your experience, please call 202-234-3062 or email firstname.lastname@example.org.