Should We Help "Reform" Social Security Disability?

Rand Paul: Advocates for the Disabled Should Help Brainstorm Ways to Cut Social Security Spending ... Kinder, gentler, cheaper (maybe).

David Weigel, Bloomberg Politics - May 12, 2015

I don’t for a minute believe Sen. Rand Paul really wants to reform Social Security Disability in any way a disabled person would like. He’s been trafficking for the last few months in the worst kind of divisive rhetoric about people who are and aren’t “truly disabled”, and philosophically, I suspect he just doesn’t think government should be giving disabled people money at all.

Eschaton’s take on this is pretty straightforward, and I pretty much agree with him.

That said, I also agree in a very narrow and limited way with Sen. Paul when he says that any reforms to Disability should happen with input from disability advocates. I don’t know if he’s aware of the phrase, “Nothing about us without us,” but that’s one way of looking at what he’s saying here.

In fact, it seems to me this is one of the big reasons why disability program reforms in the UK went sour. The major reason of course is that it was motivated most strongly by the Tory government’s drive to cut spending, and also by a strong dose of the same kind of ableism Sen. Paul has been peddling, (see “truly disabled” above). But I suspect it was even worse because there was little or no input from the UK disability community about what changes they would actually like to see in their disability support programs.

The thing is, we have ideas, and no, they don’t consist only of “more money please." We may not be as concerned with saving money and obsessed with catching cheaters as conservatives seem to be, but we do have ideas about how Social Security Disability can help foster greater independence and financial self-sufficiency. If anyone is really, truly concerned about bending the curve on Social Security Disability costs, they might try being patient about it, limiting their expectations, draining the venom out of the conversation, and asking disabled people what would work best to help us become more independent.

As it happens, there is going to be a Twitter Chat on Social Security Reform on June 1 at 1 PM Eastern, using the hashtags #SocialSecurityReform and #CareerACCESS. It is organized by disability advocates, and will probably be a good opportunity to “brainstorm” ideas and see what others are thinking. The National Council on Independent Living Annual Conference will also include a forum on Social Security Reform.

On the other hand there's always a chance, a pretty good one actually, that Sen. Paul and his colleagues just want to beat up on poor people some more, especially the ones they don’t immediately understand, like people with hidden, ambiguous, harder to pigeonhole disabilities.

That doesn’t mean we shouldn’t offer real, good faith ideas when we have them. I think we should, not to make it easier for Rand Paul to bully disabled people, but sometimes good policy cam grow out of dung.

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Photo Of The Day

It’s shaping up to be a busy catch-up day, and I’m still in recovery mode, so just a photo today. I haven’t reblogged photos as often lately, but I couldn’t resist this one.

From the fencing, man. fencing. Tumblr blog, via Just Rollin On.

Weekly Reading List

I have decided to start another weekly posting tradition, to go with the "Weekly Wrap-Up" and "Tweets Of The Week." I’ll call it "Weekly Reading List.” Each Sunday I will post links to disability-related articles I read over the previous week, but didn’t have occasion to post about. I’ll keep the comments to a minimum, and the list size manageable. I hope you all enjoy the new feature.

Here is this week’s list:

“You’re So Inspirational”: Disability and the Overall Culture of Inspiration

Jason Harris, Jason’s Connection - May 7, 2015

I like how Jason takes a broader view of what “inspirational” actually means and why it seems to be so popular for all sorts of topics, not just disability.

Horrified mum who parked in Tesco disabled bay found this note on her car windscreen

David Keane, Daily Mirror - May 6, 2015

There is something about accessible parking that makes it grounds for confrontations that are all out of proportion to it’s actual importance.

How to Use the End of the Telethon to Teach Students to Cover Disability Rights

Beth Haller, PBS Media Shift - May 8, 2015

The end of the moldy, smelly old MDA Telethon as a teachable moment for journalists.

Living, and Dying, at Home

Alana Semuels, The Atlantic - May 1, 2015

It’s good to see a serious article on long term care, specifically non-institutional, in a mainstream publication.

Burlington's Karim aims for 2016 Paralympic Games

Alex Abrami, Burlington Free Press - May 9, 2015

I like the tone of this fairly by-the-numbers disabled athlete story about an amputee in my area. It’s uplifting without being sentimental.

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Weekly Wrap-Up

Monday, May 4, 2015

• Poly Sci For Disabled People - Part 1: Money

Tuesday, May 5, 2015

• This Old (Accessible) House

Wednesday, May 6, 2015

• Poly Sci For Disabled People - Part 2: Rights, Not Privileges

Thursday, May 7, 2015

• Stannis & Shireen
• Throwback Thursday

Friday, May 8, 2015

• Apple Followups

Saturday, May 9, 2015

• Poly Sci For Disabled People - Part 3: Government and Bureaucracy

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Poly Sci For Disabled People - Part 3: Government and Bureaucracy

This is the third in a series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 3: Government and Bureaucracy

- Because so many of our support services come directly or indirectly from government, we tend to blame “government” in the broadest sense when things aren’t going well, or when we feel humiliated by the systems that are supposed to support us. Some of the most anti-government people I have met are people with disabilities who rely on government for their everyday well-being.

- When bureaucracy becomes frustrating, we may look towards more private solutions … such as private schools, charities, and religious organizations. These all have a role to play, and can help keep larger, more established programs, including government agencies, on their toes.

- These different directions also coincide with some of the major mainstream political parties and philosophies commonly debated. Conservatives and Republicans tend to distrust government solutions and hold up businesses and private charities as better avenues to meet human needs. Liberals and Democrats tend to view government approaches as more likely to do what needs to be done consistently, and to remain accountable to citizens.

- It is important for disabled people to evaluate the role of the government and private sectors in terms of which is best equipped to meet disability-related needs reliably, consistently, for everyone ... not just here and there or for a lucky few who make the right connections.

- Probably the most common model in the United States is disability services provided directly by local, private not-for-profit organizations, funded and overseen by state or federal programs. It’s a hybrid public / private model with both advantages and disadvantages. One of the disadvantages is that it is easy to become confused about who, exactly, is responsible for good or bad services, and who, exactly, we should be talking to to make changes.

- It is also important to think about the limits of the for-profit business model for providing vital services. Disabled people are equally valuable as human beings and citizens, but our disability-related needs aren’t always … or even often … equally profitable. Someone is always coming up with new ways to make meeting human needs "pay off” in the conventional sense, but it rarely works out as well as planned, and in the end, people on the receiving end tend to be left holding the bag, without backup.

- Another reason disabled people sometimes turn against government programs is that even when they try to do the right things, they tend to do them in top-down, impersonal, ham-fisted ways. Sometimes that’s unavoidable. Closing large institutions and sheltered workshops is going to be traumatic for some disabled people and their families no matter what. However, disability policies do better when they are developed under the guidance and leadership of disabled people.

- “Nothing about us without us,” isn’t just a nice thing for disabled people, it’s essential for making good disability policy and services.

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Apple Followups

A couple of months ago I blogged about possible disability uses for the new Apple Watch. It looks like folks are finding unexpected uses already:

A Deafblind Woman Found a Hidden Feature in Her Apple Watch That Changed Her Life

Max Plenke, News.Mic - May 4, 2015

Also of note, well-deserved recognition for Apple’s VoiceOver, just one of the many accessibility features installed standard in all Apple devices.

Apple receives Helen Keller award for VoiceOver technology

Buster Hein, Cult Of Mac - May 6, 2015

I’m honestly not on Apple’s payroll. It’s just that I’ve been using Apple things since the late ‘80s, and I’ve met many disabled people who swear by their accessibility tools.

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Throwback Thursday

A year ago in Disability Thinking:

Accessibility Road Trip Followup.

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Stannis & Shireen

Sunday’s episode of Game Of Thrones (Season 5, Episode 4) included a surprisingly tender scene that moved me as a disabled person ... specifically as someone who grew up with disabilities from childhood.

The scene involved Stannis Baratheon, one of the contenders for the Iron Throne of Westeros, and his daughter Shireen, who’s face is deeply scarred by Greyscale, a deadly disease she caught as a young child. In the medieval culture of the show, Greyscale is viewed as dangerous and shameful, something like leprosy, and Shireen does spend most of her time all but hiddden away in her chambers. On Sunday’s show, she asks Stannis:

“Are you ashamed of me, father?”

I wish Stannis had started with a simple, “No.” Still, his reply was touching.

Stannis tells Shireen how a Dornish trader gave him a doll to give her when she was a newborn. The doll was contaminated with Greyscale, and she contracted the disease before this could be discovered. Stannis continues:

"I was told you would die, or worse, the Greyscale would go slow and you’d grow just enough to know the world before taking it away from you. Everyone advised me to send you to the ruins of Valyria to live out your short life with the stone men before the sickness spread through the castle. I told them all to go to hell."

"I called in every maester on this side of the world. Every healer, every apothecary. They stopped the disease and saved your life. Because you did not belong across the world with the bloody stonemen. You were the Princess Shireen of House Baratheon. And you are my daughter."

I read several “special needs parent” blogs, and this speech sounded familiar. There's a distinctive combination of obstinacy, pride, and a tinge of sadness. Obstinacy in a refusal to give in to perceived pressures to "give up on" a disabled child, pride in being a disabled child’s champion, and sadness at what the child has had to endure, with possibly some deeply buried parental guilt as well. As in real life, I have mixed feelings about these reactions. It’s hard to process the idea of being in any way a disappointment or source of regret for one’s parents, even if it’s layered over with love and devotion. Also, I noticed that Stannis' speech ends up being more complimentary of him than of Shireen herself. He never did directly answer her simple question.

On the other hand, I much prefer Stannis’ reaction to what we saw last season on the same show, in which Tyrion Lannister’s father, Tywin, finally revealed his true feelings. Like Stannis, Tywin “accepted" his little person son as part of the family, but grudgingly, more out of a sense of obligation than of love. Tywin is ashamed of his son Tyrion, and he admits to Tyrion’s face that he’d have preferred to drown him in infancy, but couldn’t "because you're a Lannister of Casterly Rock.” It parallels Stannis' declaration, but out of Tywin’s mouth, it rings hollow, a twisted form of family pride that Tyrion, for one, could do without.

The way parents accept their disabled children is subtle, and not always easy to assess from the outside. “Game Of Thrones” is remarkable in how it examines life with many kinds of disabilities. It also gives remarkable insight into the many ways families deal with disabilities.

Side note:

According to this Facebook post, the actress who plays Shireen Baratheon has a disabilitty of her own, Osteogenisis Imperfecta. I wonder how her real life experience enriches her portrayal.

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Poly Sci For Disabled People - Part 2: Rights, Not Privileges

This is the second part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 2: Rights, Not Privileges

- As disabled people, we sometimes get confused about the difference between rights and privileges, between accommodation and favors.

- Because equality for disabled people usually requires being treated differently, you will sometimes hear accessibility, accommodations, and supports described, in a mean way, as “special privileges.” The idea is that things like handicapped parking, workplace accommodations, and financial supports make our lives easier than everyone else’s. 

- You have the right to accessibility and individual accommodations to your disability. These are not privileges you have to earn. They are not favors you have to rely on kind people to do for you. They get you closer to equality, not superiority or higher privilege.

- You earn human kindness and friendships by being a nice person. You may find you can earn an easier life, including some luxuries, by hard work and ingenuity. But you don’t have to earn your continued existence, or equal respect and opportunity.

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This Old (Accessible) House

Building a more accessible home, no matter your budget

Eliza Mills, Marketplace - May 1, 2015

It’s good to see that This Old House is going to deal with home accessibility again. I have a vague recollection that they did some shows like this sometime back in the early ‘90s.

Focusing on disabled veterans is a good idea, but it would be nice if they would cover some other situations, too … like elderly folks who want to stay in their own homes, families with disabled kids, and young adults with disabilities of other kinds.

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Poly Sci For Disabled People - Part 1: Money

This is the first part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 1: Money

- Fighting for money may be our least favorite activity. We would rather be fighting for accessibility, equal opportunity, and respect. Yet, we have to keep doing it. For most of us, money is our most useful adaptive device, and for many of us, it’s very, very hard to get enough of it purely through individual effort.

- “Benefits” and "Entitlements” aren't dirty words. You may be entitled to certain benefits because of your disabilities, and also because you are a citizen. You are not a second-class citizen because you need support from your fellow citizens, even if you need a lot of support.

- There are always better ways to spend money supporting disabled people, but don’t let anyone weigh whether supporting your needs is “worth it” to the taxpayers. For one thing, you are a taxpayer, too, whether or not you have a job.

- Money paid to you in benefits is not “lost” or “wasted” in any sense. It is exactly as valuable as money you earn. It buys things you need, and the people who sell those things to you make profits and feed their families with the money you pay them.

- Even if you don’t have a job now, chances are that you had a job at some point in the past, and may well have a job sometime in the future … maybe a good job, with good wages. If and when you become more financially independent, you will pay in more taxes to support your fellow citizens when they need it.

- You will hear people suggest that there “isn’t enough money” for the things disabled people need to live in health and dignity, to make the most of ourselves. Keep in mind that it is all about priorities. No matter what happens with the economy, programs and people that we really care about most get the funding they need. There is no reason why disabled people shouldn’t as well.

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