“Some people say that what I did changed the world. But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.” Judy Heumann Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.
If I have to feel thankful about an accessible bathroom, when am I ever going to be equal in the community? Judy Heumann
When she was five years old, she was denied entrance into kindergarten because – as a little girl who used a wheelchair to get around – she was considered a fire hazard. Eventually, she was given the privilege of attending a basement classroom reserved for “handicapped” kids.
When she was 23, she sued the NYC Board of Education for denying her a teacher’s license because she failed the physical exam.
She won. She taught elementary school for three years.
When she was twenty-nine years old and living in San Francisco, she led a sit-in of a federal building that lasted 26 days – and forced the Carter administration to finally implement Section 504 of the Rehabilitation Act.
Judy Heuneman, who passed away earlier this month at the age of 75, was a force of nature, and a force to contend with.
And yes, she used a wheelchair.
I first learned of Judy watching the movie Crip Camp. The documentary is about Camp Jened – an upstate-New York utopia for kids in the ’60s-’70s whose disabilities isolated them from society and kept them from the kinds of experiences that other kids had. At Jened, the kids swam, played baseball, played guitar, sang songs, dated, got into trouble…
And had a reprieve from a society that didn’t yet require schools to have wheelchair ramps or streets to have curb cuts.
And it was a way for these kids – through those summer experiences – to develop life-long bonds. Which they did.
From the age of 8 on, Judy was a camper at Jened – and ultimately became a camp counselor.
Crip Camp’s grainy 1970s footage (captured by a group of documentarians who didn’t do much with the reels of tape until Crip Camp came along) reveals young camp counselor Judy, already a budding leader, patiently (but loudly) gathering consensus over dinner options.
It was with many of those friends that she met at Jened that Judy eventually took on the federal government and demanded the regulations for Section 504 of the Rehabilitation Act – which outlawed discrimination against disabled Americans by any institutions (public or private) receiving federal funding – be implemented.
The Rehabilitation Act had been vetoed by Nixon once (Judy responded with a protest that shut down traffic in NYC). But even after it passed again and was signed by Nixon, both his administration and Ford’s let it languish without any of the regulations needed to implement it.
Carter’s administration was similarly silent.
And so, Judy, now out in San Francisco working with the the Center for Independent Living, along with other disabled people, staged a sit-in at the federal building that continued into the night… then to the next day… and the next night…
The federal government shut down the hot water to the protester’s floor. They shut down the phones. (Deaf protesters just used sign language with people standing outside.) The Black Panthers brought hot meals.
For 26 days, they stayed.
A hearing was convened at the federal building – and in response to a federal official Heumann said:
“We will no longer allow the government to oppress disabled individuals. We want the law enforced. We will accept no more discussion of segregation. And then, with obvious indignation, Heumann said, “And I would appreciate it if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.”
The administration finally relented, and regulations implementing 504 were signed.
That’s how a sit in and occupation of a federal building by disabled protesters (led by Judy) forced the Carter administration to enforce Section 504 – and change the built world around us. The implementation of 504 expanded the world we live in, and laid the groundwork for the passage of the ADA in 1990. (You can watch this Netflix short about Crip Camp and the impact Judy and the other activists had on the ‘built world’ to understand the significance of what they accomplished: https://www.youtube.com/watch?v=5aiFVhXSvgc)
Judy was there when Bush signed the ADA in 1990. In the Clinton administration she was named assistant secretary of education, where she was responsible for the nation’s federal education programs for students with disabilities. In the Obama administration, she was special assistant to Secretary of State Hillary Clinton where she was charged with promoting ideas about civil rights worldwide.
But she started as a kindergartener who was excluded.
And a camper who was empowered.
And a teacher who defiantly fought for her right to teach.
Judy wasn’t afraid to cause a fuss to get what she needed. She wasn’t afraid to cause a fuss to get something for someone else, either.
The experiences that we have – and, more importantly, how we react to them – shape the people that we become. May we all use our successes and our trials to make ourselves stronger people and better advocates.
We are a better nation because of her.
May her memory be a blessing.
Let’s get to work.
I continue to be inspired by Judy’s story. I hope you’ll watch Crip Camp. It’s an incredible movie.
But I also hope that you’ll look around at how much work has been done around disability rights and how much is left to do.
The disability rights movement has never been covered by the media in the same manner as the civil rights movement; Judy remarked that it was covered as a health issue, not an issue of equity.
Just sit with that for a moment.
Then consider that in the last three years, COVID precautions have come and gone – often regardless of (or in spite of) transmission levels or risk. And alongside those lifting safety measures (measures that keep us all safer) we’ve seen plenty of messaging about the increased risk to “vulnerable” people – who with the lifted restrictions are often encouraged to stay home (until forever, apparently).
Friend, how have you thought about that impact to disabled people’s access to society? Their ability to do all of the things that people are so excited to get back to doing without a mask? Like going to the grocery store. Or school. Or shoe shopping. Or to an art museum, or a restaurant, or a conference … or even to the community meeting of activists that you just set.
Have you thought about this access as a matter of health? Or as a matter of equity?
Or … at all?
Remember when Judy said that she would no longer accept the segregation of society?
I think about it a lot.
Because a whole swath of the nation is being shut out – segregated – because masks are too political and for some reason HEPA filters and ventilation haven’t caught on.
This is a civil rights issue, straight up.
And it has been so very disappointing for me to see self-identified progressives failing to recognize that standing up for and with the disability community isn’t just something you do when the ACA is on the line.
So when you go to the store, wear a mask. It will tell the person next to you that you give a [bleep] about their ability to participate in the world.
As you’re setting your next meeting, make masks required. Make a virtual option available. And for the love of God, don’t make your own members come forward to tell you their family member is immunocompromised, or they’re going through chemotherapy, or they have an underlying condition that you don’t know about.
Disabilities aren’t always visible, and they aren’t always permanent. Just assume everyone has one, and you’ll be on the right track.
And when you make your meetings accessible to everyone, explain why: because access is a civil rights issue, and you want everyone to be able to participate.
Judy would be proud.
Now, really, Let’s get to work.
Actions for the Week of March 21, 2023
Watch Crip Camp
I hope I’ve convinced you to watch the movie. It’s funny, irreverent, enlightening, moving … it’s just absolutely fantastic, and should be on your Netflix queue. (If you don’t have Netflix, you can watch on Netflix’s youtube channel here: https://www.youtube.com/watch?v=OFS8SpwioZ4)
(If you needed any more encouragement, it was produced by the Obamas.)
It also has an entire series of lesson plans and parent discussion guides. Included in the lessons is an important one – Strategic Use of Power and Privilege. Check them all out at their website: https://cripcamp.com/curriculum/
Suboxone Comment Period Ends In 10 Days – Submit Your Comment!
We talked about this last week, but if you have not yet submitted your comment, this is the most important action this week! A few weeks ago I described a new DEA regulation that has the potential to create a public health disaster and kill a lot of people.
The new regulation rolls back flexibilities that were put in place to permit providers to prescribe controlled substances via telehealth during the pandemic. The problem is that the regulation rolls back the flexibility provided for medications that – while controlled substances – are literally the gold standard in treating opioid use disorder.
Health care providers have been able to prescribe Suboxone (Buprenorphine), one of those gold standard medications, via telehealth since COVID. Suboxone isn’t prescribed for pain, to relieve anxiety, or to treat ADHD; it’s prescribed for people who are trying to get clean from opioids.
It works. “Buprenorphine has been shown to lower opioid-related mortality improve treatment retention, and generally improve patient outcomes“.
The COVID flexibilities have opened up treatment for a whole segment of the population that otherwise has lacked access, whether because of transportation, insurance, the lack of providers – you name it. Many people have benefited. Particularly people living in rural areas that already lack access to healthcare.
But … these new regulations would add a significant road block: it would require an in-person visit within 30 days of a health care provider prescribing Suboxone to someone suffering from opioid use disorder.
Currently there are telehealth providers who are able to manage the HUGE amount of people who need access to this medication (which many primary care physicians don’t understand or don’t want to prescribe) and are able to do so safely with required drug screens and virtual follow up appointments.
With this new requirement, people would still be able to utilize those providers – but would then have to (somehow) get an in-person visit with someone somewhere who is willing and able to provide them with a refill.
Imagine finally deciding to get clean, getting yourself set up on a medication that will blunt your cravings for heroin, and then learning that now you have to – within 30 days – find/get a provider and get an appointment?
This requirement will kill people.
And to add insult to injury, the additional 30-day-in-person requirement provides no benefit. Because all of the prescribers already require drug tests and screening, the additional hurdle of an in-person visit is just that. A hurdle. Except this one will kill people.
The comment period is open for this regulation – but just for the next 10 days, and I encourage you to not only comment – but to share the need to do so with others.
This article from MedNews Today lays out very succinctly the problem with this new requirement: https://www.medpagetoday.com/opinion/second-opinions/103524?xid=nl_secondopinion_2023-03-14&eun=g2016242d0r
But the comments that have already been written by providers and patients are enlightening as well and I encourage you to read some of them. https://www.regulations.gov/document/DEA-2023-0028-0001/comment?postedDateFrom=2023-03-14&postedDateTo=2023-03-14
Again, the comment period ends in 10 days. So please, take some time today to comment!
When commenting, there are some things you can do to make your comment more helpful to the DEA – and more persuasive.
- Explain the reasoning behind your position (don’t just say “don’t adopt this rule”) so that they can understand your opinion and use it to craft the best policy.
- Identify credentials and experience that may distinguish your comments. If you are commenting in an area in which you have relevant personal/professional experience, say so! So if you live in a rural area where it takes longer than 30 days to get a primary care appointment – or the closest MD is 30 miles away and there’s no public transportation, etc. – that’s information that is pertinent and important for the DEA to address.
- Provide personal examples if you can and if it’s appropriate.
- You can choose to comment anonymously or with your name.
Here’s where you can comment: https://www.regulations.gov/commenton/DEA-2023-0028-0001
If I give you a draft comment, it can get batched with others – and its value diminished. So please write your own comment (it can be short!). Here’s a structure to follow if it helps:
- First, explain who you are and if you have any specific experience with Suboxone or drug addiction (whether personally or loved ones).
- Second, describe why you think adding this requirement is a bad idea for people in your own community. Do you live in a rural area? Is there transportation or lack thereof? How long does it normally take to get a MD appointment? Are there sufficient providers in your community?
- Third, describe what message adding this requirement sends to people who are trying to get clean – or sends to your community. How does this requirement show the administration is handling the opioid crisis?
I hope that helps you organize your thoughts. But again – this can be a quick comment, and you can review some of the other 1.5k comments that have already been made.
Is Your Congresscritter Supporting the New Warren/Porter Bank Regulation Bill? Find Out – and Encourage Them to Cosponsor if not:
Senator Warren and Katie Porter introduced a bill that will reverse the bank deregulation of the Trump administration. In particular, the GOP “raised the asset threshold at which a bank is considered and regulated as a “systemically important financial institution” to $250 billion, exempting SVB and other mid-sized banks from regular stress testing and enhanced liquidity, risk management, and resolution plan, or “living will,” requirements.” This new bill reverses those rollbacks.
As of right now, here is who has signed on to this legislation:
Senators Tammy Baldwin (D-Wis.), Cory Booker (D-N.J.), Richard Blumenthal (D-Conn.), Tammy Duckworth (D-Ill.), Ed Markey (D-Mass.), Bernie Sanders (I-Vt.), Mazie Hirono (D-Hawaii), Dick Durbin (D-Ill.), Martin Heinrich (D-N.M.), Bob Menendez (D-N.J.), Bob Casey (D-Pa.), John Fetterman (D-Pa.), Sheldon Whitehouse (D-R.I.), Peter Welch (D-Vt.), Brian Schatz (D-Hawaii), Ben Ray Luján (D-N.M.), Chris Murphy (D-Conn.), Jeff Merkley (D-Ore.) and Representatives Pramila Jayapal (D-Wash.), Jim McGovern (D-Mass.), Hank Johnson (D-Ga.), Jerrold Nadler (D-N.Y.), Dwight Evans (D-Pa.), Bonnie Watson Coleman (D-N.J.), Betty McCollum (D-Minn.), Jan Schakowsky (D-Ill.), Marcy Kaptur (D-Ohio), Jesús “Chuy” García (D-Ill.), Barbara Lee (D-Calif.), Stephen Lynch (D-Mass.), Suzanne Bonamici (D-Ore.), Ro Khanna (D-Calif.), John Larson (D-Conn.), Mark Takano (D-Calif.), Jimmy Gomez (D-Calif.), Jamaal Bowman (D-N.Y.), Eric Swalwell (D-Calif.), Mark Pocan (D-Wis.), Jamie Raskin (D-Md.), Alexandria Ocasio-Cortez (D-N.Y.), Earl Blumenauer (D-Ore.), Jake Auchincloss (D-Mass.), Rosa DeLauro (D-Conn.), Nanette Barragan (D-Calif.), John Garamendi (D-Calif.), Ayanna Pressley (D-Mass.), Ruben Gallego (D-Ariz.), Cori Bush (D-Mo.), and Robert Garcia (D-Calif.) signed on to the legislation.
BUT that list is current as of 3/21/23. We all know that things can change, so here’s a link to double check if your Representative is a co-sponsor: https://www.congress.gov/bill/118th-congress/house-bill/1602/cosponsors?s=2&r=1&q=%7B%22search%22%3A%5B%22porter+repeal+title+iv%22%5D%7D
And here’s a link to see if your Senator is a co-sponsor: https://www.congress.gov/bill/118th-congress/senate-bill/817/cosponsors?s=1&r=2&overview=closed#tabs
Reach out to your Senator/Representative in either case – let them know that you support safe bank regulations and encourage them to sign onto this bill. And if they already have, give them a thumbs up!
WHEW! GO, YOU!
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Thank you for reading. Thank you for writing. I read and respond to every e-mail. (Really! I really do!) We’re in this together. Don’t you forget it.
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https://www.patreon.com/smalldeedsdone or via paypal at https://www.paypal.me/smalldeeds
My deepest gratitude in advance.
P.P.S: Why don’t you make someone’s day and send this pep talk to a friend or two? I bet they need it.