How Much Would It Take?

Labour calls for radical reform of social security for disabled people

Randeep Ramesh, The Guardian, UK - July 9, 2013

Awhile back, I was reading a small flurry of articles on big changes in the Great Britain's disability service programs. It was hard to figure to figure out what was going on, but it seemed like the UK system in general was simpler, based more on cash support than services, and possibly more flexible. The problem seemed to be that the Conservative / Liberal Democratic coalition government wanted to make the system a bit simpler still, but also reduce its expense, thereby cutting overall support individuals receive.

Now it looks like the opposition Labour Party has it's own proposal, and it seems to more clearly address simplicity, while reducing one what sounds like the system's most annoying aspect … people with disabilities needing to prove their impairments again and again to different departments. The Labour proposal would apparently consolidate all support into "lump sum" payments, out of which each individual would pay for whatever services they needed … personal care, rent, food, adaptive equipment, counseling, training, whatever.

That sounds good to me, as long as the individual budgets are the right amounts, and based on individual needs, not a cookie cutter formula.

If you have a disability, how big of a support check per month would it take for you to be able to buy the disability-related support and assistance you need?

Who Knew? I Really Want To Know

Ray Begovich, Indiana Professor, Finds Film Of FDR's Secret Disability 

Charles Wilson, Associated Press / Huffington Post - July 9, 2013

The article mentions the President being "pushed" in his wheelchair, but it looks to me like he's wheeling himself; in the video, I think I can see his arms and elbows swinging back and forth.

Everything you read about it says that the President kept his disability a secret, but that just doesn't sound possible. My parents grew up in the 1930s, and my Mother, at least, always told me that people knew FDR used a wheelchair. It wasn't a secret, it just wasn't discussed. I wonder if that's really how it was. I really need to read "FDR's Splendid Deception", which I believe is the definitive book on the subject.

If Roosevelt's disability was a taboo topic but widely known, that would suggest that people had much more complex ideas about disability than people today give them credit for. Roosevelt was already famous when he got polio as a younger man, so people knew he'd had it. People certainly knew a lot about polio in general … a lot more than people know these days. So, wouldn't they have assumed that Roosevelt had to have at least some residual impairments? Maybe they didn't know the details. Maybe they didn't know he was fully paralyzed. They had to know something, and I suspect there was kind of an unspoken deal between the people and their President … an agreement not to acknowledge or discuss the disability.

Anyway, that's why I need to read the book, because I really am curious about the nature and extent of FDR's so-called "deception."

"FDR's Splendid Deception: The Moving Story of Roosevelt's Massive Disability-And the Intense Efforts to Conceal It from the Public", by Hugh Gregory Gallagher, 3rd Edition, 1999

Unemployment Followup

I reread what I wrote yesterday about different kinds of unemployment / employment figures. It has occurred to me that the two kinds of figures suggest two kinds of employment goals for the disability community:

1. More people with disabilities working, and
2. More people with disabilities actively looking for jobs.

In theory, we should try to reduce the unemployment rate for people with disabilities to be closer to that for non-disabled people, while at the same time, increasing the number of people with disabilities looking for work. Initially, this would actually raise the unemployment rate, because more people would he counted who are looking but not yet hired. The goal would be to close both gaps.

Does that make sense?

A Bio And A Blog

Being A Blind Teenager

Kody Keplinger, Disability In Kidlit - July 8, 2013

Yesterday, I read this fantastic short biography by a Young Adult (YA) fiction writer, who also runs a collaborative blog of YA writers … Disability In Kidlit, described as, "Reviews, guest posts, and discussions about the portrayal of disabilities in MG/YA fiction".

Here are two of the best bits from the piece:

"That’s the thing about disability, I think. You’re a normal person, you experience normal things, and then, every once in a while, you hit that wall. That reminder that you aren’t quite like the majority of your peers. Most of the time it’s small things ... but it can still hurt like hell." 

"Before I wrap up here, I want to note that none of the typical “blind person” cliches fit me. I am not a musician, I don’t feel people’s face (eww, so weird!), and my blindness really played a very small part in my life. It occasionally impacted my friendships, it sometimes changed the way I did things in class, but for the most part, I was your average middle or high schooler. Your average middle or high schooler who just happened to use a cane and push around a cart with a big CCTV on it."

One day I hope to invite other bloggers to contribute to this site, so I'm encouraged to see a collaborative blog in the disability field.

AmputeeOT Followup: "Devotees"

One of AputeeOT's videos is about "Devotees", people who are sexually attracted specifically to people with disabilities.

I had heard before of the fact that there are people who are attracted to people with disabilities specifically because of their disabilities, but I didn't know there was a term for it, or that it was any kind of recognized subculture. My first reaction was that it's more like a "fetish", and therefore mostly a negative thing, at least from my point of view. I still feel that any such attraction worthy of a name is probably more of a fetish than a milder interest. I also suspect that most "Devotee" attention is objectifying more than appreciative. That is, it is an attraction that is very narrow, that doesn't involve much personal connection, and that turns people with disabilities into objects of highly focused interest rather than appreciation of the whole person.

On the other hand, maybe that's not saying much. A lot of sexual attraction is objectifying. Are guys who are heavily into breasts or feet, or women who are into big muscles or mustaches (or breasts or feet for that matter) all that different from people who are attracted to amputations or paralysis?

If these attractions are just the first step … the hook if you will … that can lead to a fuller connection, then fine. It's when they stay laser-focused on these particular aspects that the attraction of Devotees would be troubling to me, and unwanted.

That said, I don't object to Devotees per se. I think it all depends on behavior and whether the interest … or fetish … leads to real human connection.

Here's what Wikipedia says:

Attraction To Disability

Note: Wikipedia identifies three sub-groups, Devotees, Pretenders (people who like to pose as disabled), and Wannabes (people who actually want to become disabled), abbreviating them together as DPWs.

A couple of quotes that stood out for me:

"Despite the explosion of the DPW Web [Internet sites], many disabled people remain unaware of the attraction. Those newly introduced to it often report initial alarm and deep shock. Subsequent reactions (often after further research) appear to involve deep introspection and an eventual revision of attitudes." 

"The [disability rights] movement perforce backs the DPW stance that the disabled ought not to be branded unattractive and asexual, but by the same token resists suggestions that they ought to welcome the attentions of a sexual minority. If it has any real stance on DPWs, the movement is generally negative, seeing them as unacceptably needy and fetishistic. Despite early hopes that DPWs were welcome allies in the battle against lookism, the movement has found that they do not offer any escape from the tyranny of visual norms; they merely pile bizarre standards atop mainstream ones. In addition, the 'hero adulation' and protectiveness elements of the attraction are ideologically most unwelcome to the movement."

Weird, wild stuff … sometimes, but not necessarily, in a bad way.

Unemployment Rate? Which Unemployment Rate?

Today I think I finally understand something that's been mystifying me for years. Why are quoted employment and unemployment figures for people with disabilities all over the map?

For at least the last 20 years, I have heard figures between 60% and 75% cited as the unemployment rate for people with disabilities. Those are very high figures, yet sadly they don't seem out of line with reality. I've quoted figures like that to all sorts of audiences, and nobody ever questioned me about them. The high unemployment figures may or may not seem "right" to people, but they always seemed to be accepted as more or less accurate.

Then a couple of years ago I started seeing reports of unemployment rates more like 20% or less. That's quite a difference. Which figures are correct?

I figured these had to be two entirely different measures, encompassing different populations but under similar-sounding labels. But I could never find an explanation, until today. If you want to get a more accurate and nuanced picture of employment and unemployment of people with disabilities … and you don't mind reading figures multiple times and thinking hard about statistics … Read this June 12, 2013 release from the Bureau of Labor Statistics: Persons with a Disability: Labor Force Characteristics Summary.

Yes, I know … snooze.

The summary worth studying, because while the situation is bad, it is comprehensible.

First of all, it's important to know that the "Unemployment Rate" you hear every month on the evening news is a more narrow measurement than the simple term suggests. It is the rate of joblessness only among people who:

a. Are employed, full time or part time, or

b. Are available for work (i.e., not retired or acutely sick), and

c. Have looked for work in the past 4 weeks.

So, the unemployment rate for people with disabilities in 2012 was 13.4%, compared to an unemployment rate for people without disabilities of 7.9% in the same year. This does not include retired people, children younger than 16, or anyone unemployed who has not looked for work in the 4 weeks before being polled. So, it does not count people with disabilities who … whatever their thoughts and long-term dreams about working … are essentially not looking for work.

On the other hand, there's the "Employment-Population Ratio" ... a measure of how many people are employed ... which in 2012 was 17.8% for people with disabilities, and 63.9% for people without disabilities. These figures do count retired people, children, and anyone of working age who is not employed, for whatever reason. These are more like the figures I used to hear.

The narrower comparison, which focuses just on people who are actively in the labor market … employed or actively looking for jobs … indicates that people with disabilities have a 5.5% higher unemployment rate than non-disabled people. (13.4% disabled unemployed minus 7.9% non-disabled unemployed).

By the broader measure, including people who are unemployed for any reason, including age and short or long-term choice, shows an employment gap of 46.1% between disabled and non-disabled people, if you count everyone. (17.8% disabled employed minus 63.9% non-disabled employed). That gap represents people with disabilities who can't find work but seek it, but also those too young or too old to work, and people who for whatever reason are not actively looking for work when the poll is taken.

Which kind of measurement is the most informative?

Actually, I think you need them both. The reasons why some people with disabilities are employed and some are not are very complex, involving for each person a unique mix of the disability itself, plus training and credentials, past work experience, references, community connections, motivation, perseverance, the state of the local and national economy, and the rise and decline of specific industries and professions. A person with a disability who hasn't looked for a job in over a year … and may even tell you he or she isn't interested in working … may in fact have in mind various scenarios for eventually being employed. So, it's important to know the absolute number of people with disabilities who are unemployed, and be able to compare that percentage with the percentage of non-disabled people who are unemployed. The narrower figure, in turn, gives you a picture of the odds you may face  once you decide to look for working a focused way … as opposed to just thinking about it.

Both measurements also confirm what I'm pretty sure we all knew, which is that there is an employment gap for people with disabilities that can't be fully explained by our disabilities themselves. It is not a natural gap. It's a gap that shouldn't be there at all.

My Disabilities

Five months and 130 or so blog posts after starting this thing, maybe I should tell a little about myself and my disabilities. First the disabilities:

I have Arthrogryposis.

This condition can have different causes and an assortment of affects. For me, Arthrogryposis manifests itself in:

• Muscle weakness and stiff, less flexible joints.
• I'm short ... 4'1".
• Significant spine curvatures, both front to back and side to side.
• Reduced lung capacity caused by the spine curvatures.
• My type of Arthrogryposis is genetic, which is one of the rarer kinds.

From birth to around the start of my teens, the most significant affects involved my feet and legs, which initially were in a state that would have made it impossible for me to walk. Physical therapy, multiple surgeries, and and an assortment of
medieval torture devices braces very early on were successful, and I started walking at age 3. By the time I was 8 or thereabouts, the condition of my legs, feet, and ability to walk were no longer significant issues.

As I grew, my spine curvatures increased and the impact on my lung capacity "took over" as the most prominent aspects of my condition, which they remain to this day.

When I was 9 years old I had surgery to fuse my spine and attach a supporting rod. This mostly stopped the increase in spine curvature where it was, which probably means that my condition today is better than it would have been without the surgery. The fusion and rod also further limited my growth, and of course, I can't bend my torso. My spine was never all that pliable though, so I rarely notice this lack of flexibility. That old piece of advice, "lift with your legs, not your back", is unnecessary for me.

Despite the surgery, I still have low lung capacity, which results in significantly reduced endurance for physical activity. Mostly this means I can't walk long distances. I can walk the length of our local shopping mall, but I have to stop six or seven times to sit and rest, and most days I make good use of handicapped parking. Also, due to sleep apnea, I use a ventilator at night, attached to a tracheostomy. The ventilator and trach themselves require care and maintenance, although they are fairly easy to deal with, and don't restrict travel. Having a trach does increase my risk of lung infections, which has over time caused disruptions and probably some long-term effects. The kind of trach I have can be capped during the day, so I have no trouble speaking.

When I was in college, before I had learned to drive an adapted car, I used a mobility scooter for "walking distance" travel. Once I started driving, I mostly gave up the scooter, though I still have one I occasionally use on trips and outings with lots of walking and no place for driving.

For more details on dealing with low stamina, I recommend reading about The Spoon Theory. My symptoms are a lot different, but I do have to hoard and ration my spoons carefully, every day.

The restricted and distorted space inside my torso also restricts my stomach and digestive system. I can eat anything I want, but not much of it. It's sort of like an involuntary version of one of those gastic bands people get to lose weight. As a result, I've always been shockingly thin. I'm sure that has also further decreased my muscular development. Still, it doesn't affect me much beyond my appearance, or on Thanksgiving when my eyes are bigger than my stomach.

My general muscle weakness affects my daily life in various ways that I've adapted to, but which still occasionally causes unexpected stumbling blocks. This is especially true with my arms, hands, and fingers. Mostly it comes up when doors are hard to open, and when various mechanical controls are stiff or hard to operate … doorknobs, switches in awkward places and positions, and of course, mayonnaise and spaghetti sauce jars.

I experience some back pain, though far less than one might expect to look at me. Advil does the job.

My overall appearance is noticeably different, which does effect my social interactions, though the effect is usually short-term, at least as I experience it. The effect on my own body image and sex life is a question I'm only belatedly starting to think about seriously.

Another time I'll share some of the non-disability aspects of my life.

Awesome Sauce: Lego Leg Edition

I saw this amazing video on the Living With Disability Tumblr, and from there got to Christina Stephens' YouTube Channel, Amputee OT. I then watched all of her videos, which document her journey from deciding to get her lower leg amputated after a severe foot injury, through the surgery, recuperation, and gradual fitting of a prosthetic lower leg.

Christina is so matter-of-fact about the whole thing … cheerful, but in a way that doesn't seem forced or intentional. It seems like she probably wasn't the sort of person to sentimentalize before her accident, and has retained that quality after. It probably helps that she is an Occupational Therapist, trained to train others in adjusting to various disabilities. And she's got a nerdy enthusiasm that's impossible for me not to like.

In one of the videos we see she's painted an atheism symbol on her prosthetic. As someone who is about as close as you can get to atheism without actually fully committing to it, I wonder if an atheist outlook might help, too. It seems like one thing atheists don't do very much is anguish over "Why me?" and "What does all this mean?" She's not wondering where she went wrong, or what grand purpose there might be for her injury. It is what it is. But that's just speculation on my part, as she doesn't talk about her deeper philosophical or spiritual thoughts in her videos. That's all to the good, because by hitting just the right middle ground between revealing a lot while not over-sharing, her videos are probably much more relatable to a wider audience.

I wonder now if there are other video series that explain other disabilities in the same upbeat, factual, and unsentimental way? Maybe it's time to do some exploring.

Recommended

I just found another disability blogger I really like. Go see Girl With The Cane. 

What kind of tragedy is this?

Kids with lighter started fatal fire

Felicia Krieg, Press-Republican - July 5, 2013

So, that happened.

The three people who died were "older people in need of assisted living". An earlier article made it sound like they were the only three people there for care, and also suggested that they were there for temporary "respite", not permanently. This article makes it sound like there were other residents besides the family.

The earlier articles also didn't mention the cause. It seems like my local paper is rushing to virtual print every time another detail emerges.

I have a sick feeling about it all, and not just for the simple reason that there was a fire and people died … people who couldn't help themselves ... due apparently to "kids" literally playing with fire. Maybe its just my biases kicking in, wanting there to be some larger lesson here about institutionalization, and quasi-institutionalizing in "group homes" and "respite homes" and the like. Of course I realize that some terrible things are just tragedies, with nothing to be learned at all.

The other thing that bothers me is that it seems like the Press-Republican isn't really sure what kind of story this is, either. Again, maybe it's just that I'm biased, but it seems like they are focusing more on the people who escaped, and on the "heroics" of the firefighters than on the fact that three people died ... the emphasis seems off to me.

Another Pillar Of Disability Philosophy

Via A KPOPPER.

Independence

“Independent Living isn’t doing everything by yourself — it’s being in control of how things are done.” -- Judy Heumann

I have read and written this quotation so many times that now it seems rather dull to me. Yet, I still remember how radical and revelatory it was for me the first time I read it, probably 23 years ago. Before then, "independent living" to me meant doing all the things for myself that other people … non-disabled people … do for themselves. Put another way, I thought that if I couldn't do everything for myself, with no help, then I was not independent. I can't say I even thought that. I knew it so fundamentally that the notion didn't even have to cross my mind, much less be picked apart and analyzed by thought.

The Judy Heumann quote didn't fully change my mind, but I think it did more to change my mind more quickly than any other single factor or experience.

The other thing that changed how I saw independence in a disability context was meeting two kinds of people.

One was people with very significant disabilities who had lots of support services in a situation in which they directed their support, and were essentially the heads of their own household.

The other was people with similar kinds of disabilities … not necessarily more severe … who had lots of support and assistance but in a situation where their support systems ruled them, regimented them, controlled them, and supervised them, instead of the other way around. In other words, I saw that although physical resources are important, control and agency are the keys to independent living.

I sometimes hear people object that nobody has total control over their environment, but I think that's just a philosophical trifle … a true statement that isn't really meaningful. Of course nobody has total control, but most people are able to decide when to get dressed and what to wear, when to eat and what to have for dinner, when to go to bed and when to get up, who enters their homes and when, and when they go out of their homes and for what reason.

More importantly, independence means making the bigger life decisions, including those that could affect your well-being or even survival. Part of being a full, independent human is being able to take risks, do stupid things, and make mistakes ... and to live with the results. I'm not saying there shouldn't be safety nets. I fully support very strong safety nets for everyone, whether or not they have disabilities. But I do have a problem with disabled people being forced to give up basic autonomy in exchange for the physical help many of us need. My need for help putting on my socks doesn't give my helper license to tell me how I should live. Helpers aren't supervisors. Yet, in disability world, these two roles are often confused.

Plenty of people with disabilities are denied basic freedoms only because they depend on people and systems for their everyday existence, and are saddled with support systems that do not recognize their full personhood.

Maybe that's why, although my politics are left-wing and I'm closer to being a socialist than a blue-dog Democrat, I can understand libertarians and Tea Party people on some basic, if limited level. Freedom from need is, indeed, important. But there's something special … higher even … about the more abstract freedom of choice, of individual integrity, of human agency. For people with disabilities, especially, it is more precious because so often it is denied us, and denied us thoughtlessly, almost as an afterthought or side effect of pursuing other priorities.

Looking For A Scene ...

As I mentioned recently, I am working on a short video montage of clips from TV shows and films that feature disabled characters and disability themes. Today I'm frustrated because I'm looking for a particular scene that I was certain I'd seen on YouTube, which would mean I could download it and edit it into my project. Now I can't find it again. The scene is from the AMC television show "Breaking Bad", where Walter, Jr., the main character's teenaged son, who has cerebral palsy, has an exchange with his Uncle Hank. Hank is recovering from a shootout (he's a DEA agent), and has kind of given up, feeling useless because of physical injuries that may be permanent. Walter, Jr. basically throws his own disabilities back at Hank, suggesting that if Hank is so useless that he needs to be in a hospital forever, then maybe he, Walter, Jr. should be in a hospital, too.

I like the scene for three reasons. First, I like it because Walter, Jr.'s disability is always noticeable but rarely important to the story. Second, the scene is a reversal of a disability drama cliché … usually it's a non-disabled character telling a disabled character to "snap out of it" and "stop feeling sorry for yourself". Here, it's the other way around. Third, I like that Walter, Jr.'s argument works precisely because his Uncle Hank respects Walter, Jr. so much for his independence and way of dealing with his disability.

As an aside, the character of Walter Jr. is played by actor RJ Mitte, who does have cerebral palsy. In an interview, he says that Walter, Jr.'s impairments are a bit more severe than the actor's own, so that Mitte has to sort of go back to a time when he, himself, used to be more significantly impaired … walking with a bit more difficulty, and speaking with slightly more of an impediment.

If I can't find a way to include this scene in my collection, I'll be sad.