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July 26, 2020 marks the 30 year anniversary of the signing of the Americans with Disability Act, or ADA, into law. While I tend to focus on sharing stories that center around disability, and mostly speaking about all the ways we can do better when it comes to disability and accessibility, today I want to focus on the ways the ADA and it’s predecessor, section 504 of the Rehabilitation Act, have positively impacted our family. Additionally, I’ll share some resources where you and your family can learn more about the history of the disability civil rights movement and some of my favorite voices from the disability community to follow today.
The Early Days–People Showing Up
When I think back to our early weeks and months of Lamp’s life I remember people just showing up–seemingly out of the clear blue–to guide us, and lead us to where we needed to go next. The day she was born a woman walked into my hospital room–I’m sure she introduced herself, but I don’t remember her name or her specialty–looked at Lamp’s hand and said, “That will be a great hand for driving a power wheelchair one day!” At the time I couldn’t wrap my mind around the idea of my daughter being a wheelchair user, but she was there and she planted that prophetic seed. Who was she? During my 4 day post partum hospital stay with Lamp, doctors and specialists dropped by and made appointments for us. They didn’t ask us if we wanted to go to these appointments, they told us we needed to go to these appointments. And it was exactly the right thing to do.
One of those appointments for early childhood education services, which meant that a group of therapists came to our house a few times to sort of evaluate Lamp, do a little therapy and offer support. We were already getting therapy from the children’s hospital and I didn’t see a huge need for this at home therapy, so we discontinued. (Also, I’ll be honest—I was a little clueless about all of this and should have asked a lot more questions.)
Along with these early childhood services, Lamp was eligible for free preschool when she turned 3. Since we were living in Texas during that time that would have automatically meant all day preschool 5 days a week, and I didn’t want or need her to be in school that much, therefore we ended up at a private preschool 2 days a week. However, when we moved back to Ohio, and again qualified for preschool, in our district it was a half day, 4 days a week program we jumped on it. Not only did we really love the teachers and the program, she was picked up and dropped off in our driveway every day. What’s not to love about that?
School Years–IEP’s and Accessibility
Sometime during this process (it’s a blur now) we created her first IEP, an Individualized Education Program, that made sure to cover all areas of assistance she would need. When she started kindergarten the next year, again transportation to and from school was included in her IEP–which was emphasized to me more than once that an IEP is a legally binding document— as well as providing a one-on-one assistant to help her out during the day. Her assistant would do everything from helping her transfer out of her chair, transition from class to class, and help her during lunch and recess. Eventually we all realized she didn’t need a one-on-one assistant, and she was provided support aids who were always close at hand (but who could also help other students as well) to give assistance when needed, but who stayed a little more in the background so as to help foster her independence as well.
And before she actually started kindergarten, the school administrators came to our house, to meet with us and discuss all these things in detail. Additionally, the woman who would be her aid for a couple of years also came to our house so we could get to know her before signing off on her being a full time aid to our daughter.
As the years have rolled on, individual teachers have met with us to ask about accommodations they might need to make, and/or seeking permission for Lamp to be able to do something when the occasion was warranted–for example, being allowed to sit on the same “fun” chairs as her friends in classrooms where flexible seating is an option. Her gym teacher a couple years back did a fantastic job of always finding a way to include her in activities. Knowing that Lamp is the best problem solver for Lamp, he often just talked with her about what she could and wanted to do and he’d always help her figure out a way to join in the activities. It was no wonder she still lists gym as her favorite class.
And of course, she is in a typical school with typical peers. Lamp has been a part of the schools accelerated (gifted) program and accommodations have always been made in every aspect of her schooling. She has gone on field trips and participated in school plays and concerts. That’s not to say that things have always been perfect, like the lack of inclusive playgrounds and the fact that field day is pretty much her least favorite day of the year–but overall, she has always been a fully participating student at school, taking the same classes, the same tests, the same homework, with accommodations as needed. Obviously there are many students with IEP’s that make necessary adjustments for academics, so I’m strictly talking about Lamp and her/our experience and making the point that as a child with a disability she fully participates in a “mainstream” school.
All of these accommodations at school were made possible because of the passing of section 504 of the Rehabilitation act in 1977–the year I was born.
And then there is the world outside of school. Accessible parking, curb cuts in the sidewalk, automatic doors in public buildings, ramps, elevators, and accessible transportation. When we travel we can request accessible hotel rooms (though not always available) and our last Disney cruise was a dream with our accessible room at least twice the size of every other regular cabin, making it easy for Lamp to navigate her chair in the space.
What is truly remarkable about all of this, is that until recently I never considered that she didn’t have the right to all of this and more. I never ever, ever, ever, ever, ever, ever, ever, ever, had to question any of this because OTHER PEOPLE FOUGHT FOR HER RIGHTS.
And the reason I started to finally think about these things, is because I have finally started to learn about them. And WOW, have my eyes been opened. Not just to what “could have been” for her, but for what actually was for many people with disabilities prior to the passing of section 504 and the ADA.
Below are a list of resources for learning about these civil rights movements as well as some of the people behind them (I know there are more–this is not a comprehensive list!), current disability activists I recommend you follow AND a issues that still need to be addressed. Yes we have come so far, but we still have more work to do.
Onward.
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From Top Left clockwise: Judy Heumann’s book, All the Way to the Top children’s book, Crip Camp promo picture, Artwork by Broobs.
Documentries, Books and other Resources:
Crip Camp–this documentary film, available on Netflix, is a must watch, for everybody. Besides showing us actual footage from this camp back in the 60’s (and 70’s?) and showing us how important it is for kids who were disabled to have a place to come where they could just BE, this movie takes us through the entire disability civil rights movement. Additionally, there are so many other important lessons embedded in this show. One part that sticks with me is that these kids are sitting around listening to each other talk about their experiences at home and at school and as one girl in particular speaks, a girl who talks very slowly and who is hard to understand, they sit in rapt silence and listen. No one is rushing her, no one is talking over her–one boy does help translate–and it’s such a powerful message to me about what it means to make the world more inclusive, and letting all voices be heard.
The Power of 504–This is a short 18 minute mini documentary that takes you through the demonstrations of the 504 sit-ins, which ultimately let to section 504 of the Rehabilitation act to be signed into law. Not only did section 504 require that schools cannot discriminate against children with disabilities, it was also an important precursor to the Americans with Disabilities Act of 1990. The sit-ins lasted for 26 days–they still hold the record for the longest occupation of a federal building–and the stories from those sit-ins are remarkable and filled with so much love, courage and hope.
Being Heumann; An Unrepentant Memoir of a Disabiltiy Rights Activist by Judy Heumann–One of the main people I was introduced to in CripCamp was disability civil rights powerhouse and all around badass, Judy Heumann. I recently purchased and listened to her book on audible (as did my husband) and I was just blown away by this woman, and her life-long dedication to the disability rights movement. Judy is an American hero and I have her, and so many others, to thank for our daughter’s rights. In listening to her story, I am able to see very clearly what life could have been like for Lamp had Judy and others not stepped in to change history. Judy didn’t get to go to school when she was 5. No one came to her house to discuss her IEP, talk about accommodations and so forth. Judy was called a fire hazard. Judy’s mom had to fight to get her into a school, and even then it was clear that it was less a place of learning, and more of a placeholder for disabled kids during their formative years. I love this book and bonus, it’s read by Ali Stroker–Tony award winning actress and disability advocate.
No Pity: People with Disabilities Forging a New Civil Rights by Joseph Shapiro
I’ve been slowly reading this book for a long time, and it covers some of the same moments and movements of both CripCamp and Judy Heumann’s book, but also more. It talks specifically about the deaf community (which is mostly seen as separate from the disability community) and some of their triumphs and challenges. I would love to see this book updated as it still uses the term “mentally retarded” which is outdated at best and offensive at worst even when used in a medical context.
All The Way to the Top: How One Girl’s Fight for American’s with Disabilities Changed Everything
This is a new picture book I just received that does a great job in teaching children about disability, disability rights, and what it can look like for kids to engage in civil discourse and protesting for their rights and the rights of others. It’s based on the true story of a young activist with Cerebral Palsy named Jennifer Keelan.
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From top L, clockwise: Alice Wong, Rebeka Taussig, Keah Brown, Megan DeJarnett, Imani Barbari, Brad Lomax and Haben Girma.
People with Disabilities to Follow–This is a list of amazing disability rights activists, educators, authors you should follow, listen and learn from.
Brad Lomax–Brad Lomax died in 1984 at the age of 33. Therefore you can’t follow him on social media, or read his memoir, but you can certainly know about him. Brad was black and disabled, and he was the bridge between the two civil rights movement. Without Brad, the disability movement likely would not have had the help of the Black Panthers. And without the help of the Black Panthers, the sit-ins of 1977 over section 504 of the Rehabilitation act probably wouldn’t have been successful. I just want you to know his story. It’s important. You can read a New York Times piece about him here.
Rebekah Taussig and I “met” over Instagram back when she had just a few hundred followers. (She now has over 34K and growing.) I asked if I could interview her on my blog, she agreed and I have been (platonically) in love with Rebekah and her brilliant words ever since. Rebekah is like that amazing band that you somehow lucked upon when they were relatively new and you’ve had the privilege of seeing them play up close and personal in some small venues. And while you want to keep them all to yourself you know they’re too good to stay small, so you watch with pride–and a little wistfulness–as they move on to bigger venues and platforms and you can say, “I knew you when.” Rebekah is my No Doubt circa 1995. Follow her on Instagram and pre-order her book Sitting Pretty: The View from My Ordinary, Resiliant, Disabled Body.
Alice Wong— Alice is relatively new-to-me voice, but not in the Disability community. She is the creator of the Disability Visibility Project which is an online community dedicated to creating, sharing, and amplifying disability media and culture and so many other things! I purchased her new book, Disability Visibility: First Person Stories from the 21st Century on Audible and I can’t wait to listen to it. You can follow her on Instagram here.
Imani Barbarin of Crutches and Spice–In addition to being HILARIOUS Imani is a writer, blogger, content creator, public speaker and model. I love her videos on IG and appreciate her perspective as both a Black woman and a woman with Cerebral Palsy. You can follow her on Instagram and support her through Patreon here.
Keah Brown–Keah is also a writer who has been featured in the Washington Post, the Today Show, Refinery29 and more. She has a book that I can’t wait to read called The Pretty One: On life, Pop Culture, Disability and Other Reasons to Fall in Love with Me. Also, be sure to check out Keah’s interview with Judy Heumann here.
Alex Wegman–Is one of my favorite people to follow on Instagram as both a wheelchair user and mother. We don’t see enough representation of disabled parents and it’s so important we do. She’s thoughtful, adventurous, engaging and talks about disability, but also doesn’t talk about disability if you know what I mean.
Vilissa Thompson–Vilissa is the founder of Ramp Your Voice–a self advocacy and empowerment movement for people with disabilities, as well as a disability rights consultant, aspiring author and proud Black disabled woman. She recently co-authored a piece on CNN called The Story of the American’s with Disabilities Act is all about Bridges.
Habin Girma–Habin is a disability rights lawyer, author and speaker and disability advocate. She is also the first Deafblind person to graduate from Harvard Law. And I can’t wait to read her book, Haben: The Deafblind Woman who Conquered Harvard Law. You can also watch and listen to a wonderful interview with her here–I had no idea how interpreting worked for someone who is Deafblind–wonderful to see the ways technology can make the world more accessible.
Meriah Nichols–Meriah is an awared winning Deaf blogger, disability advocate and single mother to 3 children, one of whom is also disabled. Meriah does a fantastic job of elevating other voices and speaking from the unique position of a person who is disabled and as the mother of a child who has a different disability.
Megan DeJarnett–Megan is a speaker, writer and founder of No Such Thing Co. She has written a children’s book called No Such Thing As Normal. Megan is also a mother who is disabled, and has a child with a disability. I have enjoy listening to Megan as she experiences disability from both sides of the coin.
Victoria Nelson–Victoria and I discovered each other when our children’s books–both based on teaching children about disability and inspired by our real-life daughters–came out with in the same week! Sadly Victoria’s daughter Moriah passed away from complications from CHARGE syndrome, and never got to see her mom’s book, Hiya Moriah. But Victoria goes on to honor her daughter and raise awareness for the CHARGE community with so much love and grace–I respect her so much. And again, we’re both about to release our second books! I love when the world is small in the very best ways.
There is so much more to say.
I have spent about 5 days putting this post together, and while there is so much more to say I’m going to end it here. I would certainly like to talk about all the work that still needs to be done to truly make the world more accessible. As I read recently, and must paraphrase because I don’t remember the source, someone said you can create laws to make buildings more accessible, but you can’t create laws to make people’s hearts and minds more open. And while there are still a staggering number of spaces thare are inaccessible (Only buildings built after 1990 or that have renovations that exceed 20% of the total value must comply with ADA laws. Other buildings are grandfathered in.) I believe that the main work to do is one in which we open hearts and minds to, as my friend Rebekah once said, “being open, present and flexible as to what it means to be human in this world.”
What did I leave out? Who and or what resource would you add? Does it feel like Disability is finally being recognized in earnst and hopefully hitting it’s stride? I hope so.
