Disability Thought Of The Week: Your First Time

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

When did you first flex your advocacy or activism muscles?

What was the first time you really spoke up for yourself, as a disabled person, to assert your rights and disability-related needs? What was the first time you participated in activism, with other disabled people, on a disability-related public issue? When was it? What was it about? At what point in your life did it happen?

I’m asking myself ... and I’m asking you, the reader. Respond however you are able, with a blog comment below, a Twitter reply, or a Facebook comment.

Starting Somewhere

Photo of the start lane of a running track

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Weekly Watching List: Convention Speakers

Photo of a crowded audience, viewed from behind a speaker's platform and microphone

I have so many thoughts about the party convention speakers with disabilities we saw over the last two weeks. Instead of trying to make some definitive statement about what this sudden increase in disability representation means, I’m just going to post all of the available videos here, and suggest a few things to think about when you watch them.

1. The chronological list starts with Brock Mealer, who spoke at the Republican National Convention. As far as I know, he was the only speaker with a disability at the RNC, and certainly the only one who spoke about anything related to disability as a topic. If I missed someone, please tell me and I will gladly add them to the list.

2. The main question within the disability community seems to be whether the disabled speakers at the Democratic National Convention were signs of real political progress, or just weapons used to exploit one of Donald Trump more distinctive weak points. My thinking leans towards authenticity. I think the breakthrough people are talking about is more or less real. However, I also believe that a disabled speaker can be both authentic and “used" by candidates who may or may not fully understand or buy into disability issues. These positive and negative "spins" are not mutually exclusive.

3. Or, maybe this was all just politicized "inspiration porn." Again, I think something can have inspiration porn qualities, and also be genuinely empowering and substantive at the same time.

4. Individual reactions to these speeches and their meanings are also influenced by pre-existing feelings about the political parties and candidates involved. If you’re a Hillary Clinton hater or skeptic, it takes extra effort to appreciate the historic significance of the DNC's speakers with disabilities. And if you can’t stand Trump, it’s hard to see any value in Brock Mealer’s talk about his injury and rehabilitation. Maybe the best we can do is maintain a bit of loyalty to any disabled speaker, and try to at least entertain the thought that they are at least there because they want to be, and saying things they really believe, whether it completely works for us or not.

5. What is right response to Donald Trump’s offensive mockery of a disabled reporter last fall? It seems likely the DNC's inclusion of disability had something to do with rubbing Trump's nose in the incident, but how significant is Trump’s mockery? How is it connected to disability policies that can help or hurt disabled people much more profoundly than moral outrage and hurt feelings? How can we take non-disabled observers to the next step, from shocked sensibilities to a functional knowledge and interest in actual disability issues?

6. In other words, if this is a real breakthrough, where do we go from here? How do we capitalize on it, regardless of how pure and principled ... or compromised and sullied by partisan politics ... these convention appearances may have been?

Watch the speeches in the clips below, and share your reactions in the comments:

Brock Mealer

I did leave out speeches by non-disabled people who mentioned disability, including Hillary Clinton's Acceptance Speech. That's well worth listening to as well, particularly for the ways she talks about disabled people and disability issues. Here's a beautiful reflection on this by Ingrid Tischer, #CripTheVote: You Have Hillary Clinton to Blame for This Blog Post.

Throwback Thursday

Mr. Peabody and Sherman, classic cartoon characters, in front of an elaborate wall of machinery, the "Wayback Machine" time machine. Mr. Peabody is a white dog with glasses, Sherman is a red haired boy with glasses

Most Thursdays I post whatever I find here at Disability Thinking from the same date one, two, or three years back. This week, all I found was skipped days and a "Housekeeping" post about changes in the site design. So instead, I went looking for something Historical with a capital "H" to post about.

Since we are neck deep in a U.S. General Election campaign, and seeing as how I've been thinking A LOT about the intersection and overlap of disability culture, disability activism, and politics through the #CripTheVote campaign ... I decided to go looking for some good video to share about our one indisputably, really significantly physically disabled President, Franklin D. Roosevelt.

Black and white photo of President Franklin Roosevelt sitting in a wheelchair on a patio, talking to a young girl while holding a small dog in his lap

I realize that other Presidents probably fit the definition of disability we generally use today. President Lincoln pretty clearly had recurrent depression. Woodrow Wilson had a stroke well into his Presidency, although he's not perhaps the most empowering example as it pretty much meant he was an absentee President for quite some time. And there are probably others that were hard of hearing, had poor eyesight, or were, to use an archaic term, a bit "lame" while in office.

Franklin Roosevelt, on the other hand, was almost entirely paralyzed from the waist down as a result of polio. He never walked a step without help after contracting Polio in 1921. He used a wheelchair every day, until the day he died, partway into his fourth Presidential term.

If you're reading this blog, of course, you probably know all this. You might also counter that while FDR was disabled, he didn't identify as disabled, at least not publicly. In fact, conventional wisdom is that he succeeded in politics precisely because he deliberately hid his disability from the general public. By today's standards of Disability Culture, that could be viewed as sort of disreputable. FDR "triumphed over his disability" partly by surrendering to or cutting a deal with ableism. I think there's real truth to that.

I also think it's a lot more complicated. For one thing, based on a few books I've read about Roosevelt, and things my Mom told me about growing up during the Roosevelt years, it seems like Roosevelt and the public had a kind of mutual pact to sort of know about his disability and yet not acknowledge it. I'm sure many, if not most Americans had no idea, but Roosevelt was a famous up-and-coming politician before his Polio attack. He ran for Vice President before he had Polio. Anyone at all tuned in to politics knew who he was. And when a few years after his known illness, he gave the speech nominating Al Smith at the 1924 Democratic Convention, he got gasps and wild cheers exactly because everyone saw it as a stunning comeback from "crippling" illness. Crucially, at least some people there had to notice that he didn't bound up the stairs to the podium, or walk briskly down a rope line shaking hands afterwards. He stood, stiffly, helped into position by his sons, and as he spoke, he used unusually animated head gestures to substitute for the usual hand-waving, because he had to hold tight to the podium just to stay upright.

When I read James Tobin's account of this speech in his book The Man He Became, I was inspired. There’s no other word for it. Whether or not Roosevelt hid his disability, whether or not he ever "identified as disabled" the way we talk about it today, whether or not he aided and abetted ableism instead of challenging it ... Franklin Roosevelt was a bad-ass disabled man who made nonsense of ableism by his very example.

And while we're at it, he was incredibly practical and very sophisticated about how he processed his own disability. Without having names for them, he really did blend aspects of what today we would call the Medical Model and Social Model of disability. This enabled him to succeed in the biggest possible way in politics without having to first be “cured” of his disability, even though he, personally, never totally gave up on that goal. He decided quite consciously that his higher priority was politics, so he put the cure he did long for on a back burner basically for the remainder of his very eventful and consequential life. It’s what millions of people disabled later in life still do today.

I can’t find film of FDR’s 1924 “comeback” speech, but here is his nomination speech at the 1932 Democratic Convention:

Throwback Thursday

Picture of the time machine from the film "Time Machine"

Two years ago in Disability Thinking: Book Club: “The Man He Became”

It may be time for me to re-read “The Man He Became.” The book draws a much more nuanced picture of Franklin D. Roosevelt as a disabled man than anything previously published. In modern terms, he neatly straddled the Medical Model and Social Model of disability. He never gave up on finding a cure for Polio, and I don’t think he would have related to anything like today’s “disability pride” or “disability culture.” Yet in his own life, he clearly made a conscious decision to cut short his personal quest for recovery in order to revive his political career. He carefully restricted how his disability was pictured and discussed in public. In person, he loved and trusted the advice and companionship of others with disabilities … people who otherwise had no connection at all with Roosevelt’s political experience or social privilege. He consulted the best medical experts he could find, but ultimately developed his own theories and treatments. His political resurrection relied on what we would now call “Inspiration Porn,” but he would never rely on such sympathy again. As a disabled man, FDR was of his time, and ahead of it, simultaneously.

“The Man He Became”, by James Tobin

Invalid Corps Kickstarter

Photo of a Civil War era Union Army button, brass colored, with engraving of an eagle
Hello, I'm back from my blogging break.

I have never done this before on my blog, and I probably won't do it often, but I strongly urge readers to support a Kickstarter fund raising campaign for a documentary film about the Civil War Invalid Corps and the Battle of Fort Stevens. This filmmaker is Day Al-Mohammed, who is well known in the disability culture and activist community. I know her through the disability blogging and social media community. Day works in Washington, DC as a policy analyst, so this project seems like a personal passion for her.

The Invalid Corps was a section of the Union Army in the Civil War, manned by wounded soldiers. These are soldiers who chose to keep serving and fighting, even though they had permanent disabilities like amputations, blindness, and what we would today call Post Traumatic Stress Disorder.

Let me quote Day on why this subject and project are important to her:

"Uncovering these heroes is a personal passion of mine. As a woman with a disability, and as a volunteer with the US Coast Guard Auxiliary, I feel a kinship with their need to serve and their desire to do what they could. After more than 15 years working on disability policy issues and working with youth with disabilities, I have seen how important it is to see people like yourself - models and mentors. Disability doesn't just exist today, but existed in the past."

"This is a lost history of men who sacrificed for their country and then chose to remain on duty; of men who chose to continue to serve with a disability. It is a story that should be told, not just from a historical standpoint but to understand and recognize the efforts of men and women in uniform today."

This project pushes all of my buttons, in a good way. I was a history major in college, and I am still a history buff today. In fact, the Civil War is one of my favorite subjects. And like Day, I am disabled, so this project has personal, crossover appeal for me.

I am making a pledge today. I hope lots of readers will, too, and spread the word, especially among your friends with disabilities and their families. As you probably know, you don't have to pledge a lot to make a difference. But do it now, because there are only 14 days left to go in the campaign, and the way Kickstarter works, they only get the money if they reach their $7,776 goal.


----------

Old Video, Fresh Ideas



22 years in Independent Living and I never saw this video about Ed Roberts until yesterday. There’s nothing in it I didn’t know from other sources, but I really feel like I missed out not seeing this much earlier in my Independent Living career.

The video does have a bit of a corporate instructional film feel, but focus on the words, which are as relevant today as they were in the early ‘90s. In fact, I am amazed at how current the content really is. Just update the technology from a “word board” to an iPad, make the music a little more energetic, (or just get rid of it entirely), shoot it in high-res digital, and this could be made today.
Sadly, we don’t have Ed Roberts anymore. He died in 1995. But, there are other people still living who share Ed Roberts’ philosophy and commitment. You might find them working at your nearest Center for Independent Living. If you want to understand what Centers for Independent Living are and what they are supposed to be, this video is an excellent place to start.

----------

[Facebook] [Twitter] [Podcast] [Support]

9 Ways America Would Be Different Without The ADA

#AmericaWithoutADA - How would America be different if the Americans with Disabilities Act had never passed?
It is hard to get a handle on what the Americans with Disabilities Act has accomplished and meant to disabled Americans for the last 25 years. As a disabled person myself, I have been trying to think of a way to sum up the ADA’s importance.

Pretty much everyone in the disability community celebrates the ADA, but it’s a very glass half full / glass half empty thing for us. How each of us evaluates the ADA says as much about our own personalities and individual experiences than about the law itself. Unfortunately there aren’t many objective measures of the ADA's success or failure. How do we assess the value of the ADA? Has it really made much of a difference?

Maybe we should ask, “What would America be like today, if the ADA had not become law in 1990?"

Set aside the very strong possibility that an ADA of some kind would have passed eventually, in 1995 or maybe 2000. Let’s suppose instead that after failing to pass in 1990, the whole idea of a civil rights law to cover disabled Americans falls out of favor entirely.

Here are 9 ways America would be different today, without the ADA:

1. Most buildings of all kinds built after 1992 would have unnecessary barriers like narrow doorways and steps at entrances. Facilities and features for disabled people would be rare, separate, hidden from view, and hard to find.

2. Disabled people would only venture out into the community or travel for bare essentials. Most recreational places like restaurants, theaters, stadiums, hotels and motels would lack accessibility restrooms, restricting disabled people to only the briefest visits.

3. Sidewalk curb ramps would be rare, and wheelchair users riding in the street would be a major local irritant issue, similar to cars vs. bikes.

4. A handful of colleges and universities would be known for their accessibility and accommodation practices, and disabled people would have to go to them or not go to college at all. A few very expensive private colleges would probably be founded just for students with specific kinds of disabilities.

5. Virtually all disability activism would consist of groups representing specific disabilities lobbying for very targeted benefits and privileges, plus individuals raising money to pay for personal needs. The concept of “disability rights” would be viewed abstractly, discussed mainly by theorists and academics but unfamiliar to most disabled people.

6. There would be huge opportunity and participation gaps between disabled people with some wealth, who could pay for their own accommodations in workplaces and other areas, and those too poor to do so.

7. Far fewer disabled people would even attempt to get jobs, since they would be told quite plainly that they are not being hired because of their disabilities. Mentally ill people would find it almost impossible to get jobs of any kind, as employers would regularly and legally probe into whether applicants had any mental health histories.

8. Elderly people would move into nursing homes and similar facilities sooner and in much higher numbers, due in part to less accessible communities, and also because of the lack of any meaningful commitment to the principals of “most integrated setting."

9. Very few buses trains, or subways would be wheelchair accessible, mostly in the biggest cities and on a handful of the busiest routes. Accessible, affordable public transportation in rural areas would not exist, apart from a few vans operated irregularly by disability non-profits, nursing homes, and churches.

What do you think would be different today without the ADA? Join a Twitter hashtag … #AmericaWithoutADA

----------

#DisabilityStories

Erin Blasco - July 14, 2015

Blue box that says “#DisabilityStories July 15, 20150” with a pointing hand symbol.

I will be spending most of the day dipping in and out of this huge Twitter event, marking the 25th Anniversary of the Americans with Disabilities Act. It’s organized by the National Museum of American History. Click the link above for a good summary of what it’s all about and how to participate. Click here to see a schedule for the day.

---------

Revisiting "The Man He Became": Part Three

Cover of the book "The Man He Became" by James Tobin with photo of Franklin Roosevelt
This Tuesday, Wednesday, and Thursday, I’m taking a break from regular blogging, and instead re-run my three-part review of James Tobin’s book, “The Man He Became,” about Franklin D. Roosevelt’s bout with Polio, his rehabilitation, and his return to politics as a disabled man.

Here is a sample, then a link to Part Three:

"I love the fact that while Roosevelt was an extremely private person about his own situation, he actively sought and almost reveled in connections with others who had Polio. He was a natural leader, but he was also a good listener and good learner, whether the teacher was a distinguished doctor or a 15 year old kid who had lived with Polio for longer than he had. Without realizing it, Roosevelt was pioneering “Peer Counseling”, not just as an individual pursuit, but in a more formal way at Warm Springs."

February 16, 2014

----------

[Facebook] [Twitter] [Podcast]