Invalid Corps Kickstarter

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.

Click here to make a Kickstarter pledge.

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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.

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9 Ways America Would Be Different Without The ADA

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

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#DisabilityStories

7 things to know about #DisabilityStories on July 15

Erin Blasco - July 14, 2015

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.

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Revisiting "The Man He Became": Part Three

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."

Book Club: "The Man He Became", Part Three: "Resurrection", and Conclusions

February 16, 2014

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Revisiting "The Man He Became": Part Two

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 Two:

"I was struck by Roosevelt’s frequent use of the made-up word, “Infradig” … meaning things not to be talked about. Anything to do with his disability was “Infradig” in normal conversation. There were two exceptions ... he would discuss his condition with medical professionals and with other people who had Polio. Tobin here starts to mention letters Roosevelt exchanged with other people who had Polio … people from all walks of life, who had nothing in common with him except Polio. I was enormously moved to read that this exceptionally private man was so open with details of his life with people he barely knew, because he sought their advice and, eventually, began to offer his advice to them."

Book Club: "The Man He Became", Part Two: "He's Through"

February 8, 2015

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Revisiting "The Man He Became": Part One

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 One:

"'The Man He Became' is fascinating and emotionally engaging. I thought I would learn things I didn’t know before. I sensed that I would agree with some of Tobin’s new conclusions. What I didn’t expect was to feel so personally close to Franklin Roosevelt as he went through his bout with Polio. And I didn’t expect to recognize so many of the social habits, irritations, and forces that FDR had to contend with. The way the story is shaping up, it really does seem like FDR was a forerunner of today’s “social model” of disability, whether or not he knew it or Intended to be."

Book Club: "The Man He Became", Part One: "Virus and Host"

January 25, 2014

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TED Talk On Autism History

I haven’t seen this TED Talk posted very much on Facebook or referred to on other social media. I’m surprised. Autism is a pretty intense topic, with fully-formed ideas and ideologies from at least two or three different perspectives. The speaker seems to come from a neurodiversity point of view, though he only hints at how deep the divide can be between, for instance, Autism Speaks supporters and autistic bloggers. The value here is the history, which helps explain how all the different paradigms of autism got to be the way they are. If nothing else, it’s helpful to know that autism has always been controversial, and our understanding of it has always been at least as ideological as scientific.

I also think there are insights here that can help increase understanding in both of the main camps. People with the more medical-model view that autism is a public health disaster get more evidence that it is so much more and different than a disease in the typical sense of the word. Plus, neurodiversity advocates might gain some understanding of why so many parents are resistant to different concepts of autism, which are often expressed as passionate criticism of what parents do with autism ... since parents, and particularly women, were previously all-out blamed for autism. I can even understand a little more why some parents don't care what science tells them about, say, vaccines, since they can point to how wrong about autism experts have been over the years.

If I'm missing important points about this video, I would love to hear about it.

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Good TV

Is it possible for a TV show to be too progressive?

It’s a wonderful thing to come across a new TV show to love, entirely by accident. That happened to me a couple of weeks ago when I stumbled upon the Australian series, Miss Fisher’s Murder Mysteries. It’s like Downton Abbey on cocaine, and with more sex and murder.

Another aspect that caught me by surprise is that at least two of the episodes available on Netflix include characters with disabilities.

Season 1, Episode 12, “Murder in the Dark,” involves one of lead character Phryne Fisher’s adult cousins, who appears to have Cerebral Palsy. His portrayal is a mixed bag. In some ways he is treated like a great big child, and he seems to have internalized this, as he sort of acts like one. On the other hand, he isn’t hidden away and Phryne treats him with respect and affection pretty much the same as any close cousins of around the same age. He ends up seeming like a person who is cognitively impaired, but probably "smarter" than most people give him credit for.

Season 2, Episode 8, “The Blood of Juana the Mad,” takes place at a University, and involves a graduate student I am positive we are supposed to understand is autistic. Although she is a little on the stereotypical side, he is interesting partly because autism hadn’t been identified in the mid 1920s, which is when this show takes place. In this case, most people around her treat her like a “madwoman.” But Phryne and, following her lead, the other people on her team, just roll with the woman’s “quirks” and “obsessions," which immediately makes her seem less odd and allows a working relationship to develop.

One thing I haven’t quite decided yet is whether Miss Fisher’s Murder Mysteries is too progressive for a period piece. Many of the episodes deal with one social justice issue or another, not just disability. It sometimes seems like Miss Fisher has been sent back in time from 2015. It’s hard to imagine someone like her, in her, era having the liberal, open-minded views she has. All of her opinions are awesome. Just once I’d like to see her have a realistic 1920s prejudice about something ... a bit of highbrow anti-semitism, a conventional view of Aboriginals, or some other unpleasant but unsurprising attitude she could maybe struggle to overcome. Still, her easy progressivism does feel earned most of the time. Phryne is meant to be a free spirit and a non-conformist, who both fits into and clashes with her upper class upbringing. The best thing about this is that because people can't help liking her, they tend to find themselves adopting her ideas, sometimes much to their surprise. The progressivism on the show is a bit anachronistic, but it works.

This is something I think about a lot when it comes to disability on TV. Which is more important ... sending progressive messages about disability for today's audience, or accurately depicting how disabled people are treated in the eras and settings in which they are depicted? Seeing ableism on-screen can be upsetting, but the lack of it can make an otherwise good show feel like a nursery school lesson. I guess the key is finding the right balance.

I’ll probably have more to say about this question, and this great TV show, in an upcoming Disability.TV Podcast.

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Memorial Day

World War I Rehabilitation

"Beyond Affliction: The Disability History Project"

National Public Radio

1998

Memorial Day seems like a good occasion to think about the role of disabled military veterans not only in serving our country in war, but also in shaping the history of disability.

The First World War was one of the first wars to produce massive numbers of severely wounded soldiers who did not die soon afterwards. This coincided with other aspects of modernity, such as progressivism, which legitimized government action to address social problems, the professionalization of medicine and other related fields, which started to standardize care and weed out quackery, and advances in consumer technology, which enabled industry to meet newly identified needs more quickly than at any other time in history.

As this part of the NPR series points out, disabled veterans were still treated with condescension and pity, but at the time that was an improvement over how most disabled people had been perceived. As people started to think better of disabled veterans, it must have helped get people used to the idea that disability itself wasn’t the personal tragedy or societal threat it once seemed to be.

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Photo Of The Day

I love vintage disability photos!

From the Hands of Quacks, via Wheelchair Problems.

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That Wheelchair

National Museum Of American History

Ed Roberts' Wheelchair Records a Story of Obstacles Overcome

Victoria Dawson, Smithsonian.com - March 13, 2015

It’s hard to believe Ed Roberts died 20 years ago. I never met him, but by creating the Independent Living movement, he was one of the most influential people in my life. Ed Roberts was inspirational, in the best, least sentimental, most literal sense. His example libertates disabled people, and his ideas give structure to our struggle for equality and freedom:

“ … a man who defied—and encouraged others to defy—the once-undisputed view that severely disabled people belonged in institutions and that the able-bodied best knew what the disabled needed."

I guess if you have to boil Independent Living … and all of Disability Culture for that matter … into two points, those are good ones.

As for the wheelchair, I love how used, personalized, and “lived in” it looks. I also appreciate what Simi Linton says about wheelchairs in a quote in the Smithsonian article:

"'It isn’t a device that binds us or limits us: it is an ally, an accommodation,' says Simi Linton, a consultant on disability and the arts, the author of My Body Politic, and herself a wheelchair user. 'It shows a disabled person’s authority over the terms of mobility. It expands our horizons.'"

Ed Roberts and the birth of Independent Living are both part of history. Yet, the issues today are basically the same as they have been from the start. We still struggle to help disabled people live on their own terms. Disabled voices still have to fight to be heard and listened to. And people still view disabled people and their accessories with as sort of low-grade dread.

There’s still a lot of work to do. Even thought some of the surface issues have changed, and even though expectations for disabled people are, thankfully, somewhat higher than they used to be, the goals and battles are basically same.

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Photo Of The Day

It’s been awhile since I posted a photo here.

From Old Pics Archive (@oldpicsarchive), via Day Al-Mohamed (@DayAlMohamed).

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Old Timey People

Were the “old days” really as terrible for disabled people as we tend to think? Were people back then just grossly ignorant and callous about disability? Or, is that an assumption we make, or a useful conceit to help people today feel superior?

If you go back far enough in history, I’m sure you can find eras where most people really did think you could “catch" cognitive impairment, that a club foot was a punishment for the sins of great-grandparents, or that blind people were psychic. But we tend to talk about more recent history as if only 2 or 3 generations ago, people's beliefs about disability were universally medieval, and that’s why we had asylums, forced sterilization, and ugly laws.

I think that maybe institutions, laws, and taboos were a lot more terrible than they are today. I’m not sure people were that much worse though. As with slavery, there must have been non-trivial percentages of people in, say, the 1910s who didn’t buy disgusting ideas about disability any more than we do today. If that’s true, it seems unfair to forget about them. On the other hand, one wonders, then, why more people didn’t object when the rest of society was treating disabled people like crap.

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Newbie FAQs: MLK Day

What does disability have to do with the Martin Luther King Holiday?

It’s risky to draw out too many similarities between disability and race. It’s really easy to make these kinds of analogies glib and appropriative. It’s also tempting, and not in a good way, to try and make everything about the Civil Rights Movement match up perfectly with the Disability Rights Movement. The whole thing can get pretty ridiculous and insulting very quickly.

The reason we may think of making the connection is pretty valid though. The everyday experience of both race and disability include social stigma and practical discrimination. In fact, there are reasonable arguments to be made that both race and disability are actually social constructs … that they are in fact all about prejudice, and very little about anything else. I think it’s also worth acknowledging that historically, both the Civil Rights and Disability Rights movements focused on laws and policies to bring about change. And both, to different extents, have seen the limits on how much you can change everyday life by changing laws. You have to do it, but it’s not enough by itself.

Finally, I would say that while the experience of disability is very different in many ways from the experience of race, it is nevertheless true that for many of us with disabilities, disability feels more like race, or other social identities, than it feels like illness or disease. That is still a surprise to some folks when they hear it, and it tends to be a key conceptual breakthrough for disabled people, too, when they have that realization.

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A Fuller Picture Of A Disability Hero

I have blogged before about Claudius, the fourth Emperor of Rome, and arguably the most powerful disabled person in history. When I say that he is one of my disability heroes, though, I am indulging in a bit of artistic license and selective ignorance.

Like many modern people, I was introduced to Claudius by Robert Graves’ books, I, Claudius and Claudius The God … and by the late ‘70s BBC series, I, Claudius. Although based on the writings of contemporary Roman and later European historians, Graves’ account of Claudius and his fractious family is fictionalized. The books are novels, not histories.

It’s also easy for a disabled person like me to focus too much on Claudius’ disabilities, about which specific information is sketchy. Besides not really knowing how severe his disabilities were, or what kind, (Cerebral Palsy? Epilepsy? Polio?), there is the matter of his less-than-admirable personal life … especially how he treated the women in his life ... and the fact that he was a “good” Emperor in the context of a former republic that had more or less voluntarily opted for dictatorship, and a political system where bribery, assassination, and purges were standard operating procedure.

Still, despite all the caveats, it’s hard to escape the essential fact that a man who was at least regarded as being an “idiot” became Emperor, and instead of being someone's puppet, was one of the most effective and honest Emperors in he long history of Rome.

For a more complete, history of Claudius, (though brief), I highly recommend the following episodes of The History Of Rome, the epic historical podcast by Mike Duncan. It’s interesting how he sort of plays along with the idea that there was something inherently comical about Claudius’ rise to power, while clearly admiring Claudius and his record of achievement. Personally, I find my affection and admiration for Claudius stronger for knowing more of the historical facts.

• Episode 61 - What, me Claudius?
• Episode 62 - Take My Wife … Please
• Episode 63 - A Farewell to Claudius

Veterans Day

My maternal grandfather, Carroll Dana Fearon, was an ambulance driver in Italy during the First World War, serving in the United States Army Ambulance Service. He was in basically the same outfit as Ernest Hemingway, in a conflict that started 100 years and 3 months ago.

Grandpa was deaf. I think, though I’m not positive, that he lost much of hearing during the war. For all of the time I knew him, he used a hearing aid that worked reasonably well, and I don’t think he ever learned Sign Language. However, his hearing loss was noticeable to others, and I’m sure that while he was a highly functional and successful businessman, being deaf was something he had to consciously grapple with every day.

Grandpa Fearon died 1987, when I was 20 years old. I wish we had overlapped a few more years, so that I could have talked with him more about his war experiences and how he felt about his own disability. I bet he could have told some stories about the disabilities he saw imposed in such massive quantities by a modern, mechanized war fought with strategies that were already out of date in the Civil War.

Tweet Of The Day

FDR and pals!

The History and power of our community @crippower @ADALegacy @ADAYouthMatter pic.twitter.com/AMzHjkNXz3
— ADA Legacy Tour (@ADALegacyTour) October 24, 2014

Buy It: I, Claudius (the book)

From the Amazon.com listing:

"Considered an idiot because of his physical infirmities, Claudius survived the intrigues and poisonings of the reigns of Augustus, Tiberius, and the Mad Caligula to become emperor in 41 A.D. A masterpiece.”

This book and it’s sequel, Claudius The God: And His Wife Messalina and the BBC miniseries take ample artistic license, but Emperor Claudius really did have disabilities, most likely polio and epilepsy. Claudius is one of my historical heroes, and should be for everyone born with disabilities.

T4 Monument

Nazi 'euthanasia' of the disabled 'can never be forgotten’

Andreas Jürgens, Deutsche Welle - September 2, 2014

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

Melissa Eddy, New York Times - September 2, 2014

Remembering the Nazi T4 program is important, and not just in the "don't forget about us" sense. The reasons why disabled people were targeted were in many respects similar to why other groups were targeted, but in other ways different.

On the one hand, Nazis argued that life with disabilities was intolerable for the disabled themselves, and that killing them was an act of compassion.

I have seen footage from Nazi propaganda films that push the supposed wretchedness of life with a disability by showing disabled people living in neglect and squalor. It's a more distilled version of how people today conflate the stigma and bureaucratic nightmares imposed on disabled people with the experience of disabilities themselves. We treat disabled people horribly, then look at them and note how horrible it is to have a disability. Treating disabled people better doesn't seem to be taken seriously as an alternative solution. Instead we get increased support for "assisted suicide", and in the Nazi's case, forced euthanasia, (i.e. medically murdering disabled people).

Nevertheless it’s an interesting difference. I may be wrong, but I don’t think the Nazis ever tried to justify killing Jews, Homosexuals, and Communists by saying that it was a kindness to them.

At the same time, Nazi theorists argued that disabled people were an unproductive drain on the state's resources, a negative drag on the ongoing biological improvement, strengthening, and purification of the German race. So really, it didn't matter whether killing disabled people was compassionate or not. It was good for the state, and good for the race, and for the Nazis, that was reason enough.

Both arguments ... compassion and the good of the state ... were full of shit, but you can still hear echoes of those arguments today. It is striking how often discussions of, say, assisted suicide start out citing individual choice and the compassionate end to someone’s suffering, and then morph into musings about the high cost of sick peoples’ final months and the “wastefulness” of “extending" peoples’ lives with “machines”.

We need this specific memorial to this part of the Holocaust because we need the reminder that horrible policies aren’t only enacted for explicitly horrible reasons. Sometimes, they develop out of ideas that seem to some to be eminently reasonable, even progressive.