More Debate Coverage

My review of the 3rd Democratic Presidential Debate is up at the Center for Disability Rights blog:

The Full Plate and The Missing Topic

… and Emily Munson’s take on the same debate:

Three for Three: All the Candidates Disappointed

It’s interesting that we both took notice of the candidates’ campaign against opiates. It might be a thing, and it’s certainly the kind of issue that can unique disabled people across party and ideological lines.

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More Debate Coverage

My take on the 5th Republican Presidential Debate is up at the Center for Disability Rights blog:

Safety At All Costs: Safety At All Costs Republican Presidential Debate: December, 15 2015

Emily Munson also wrote about the same debate for CDR:

Republicans Strategize and Engage: The National Security Debate

Our politics are different, but I think our posts go together pretty well.

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Throwback Thursday

One year ago in Disability Thinking: Questions For Candidates.

These questions hold up pretty well. Disability issues don’t change all that much from one election to another. General Election years are a bit different, but I expect most of these issues will still be relevant next year.

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Inspiration Porn: High School Gestures

I am still working on a sort of master post on Inspiration Porn, but I want to take another detour to talk about a subset of this loosely defined phenomenon. I'll call it High School Gestures, referring to three practices that have become popular in American high schools and a familiar trope in "feel good" media:

1. High school students electing a disabled student to be Prom King or Queen.

2. Organizing and hosting "special" prom events, specifically for disabled students.

3. Allowing a disabled student to "run a play" with a sports team.

Three key factors make these practices a type of Inspiration Porn:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that "the kids today" may not be going to Hell after all ... the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

Labeling these kinds of events Inspiration Porn obviously indicates that I have problems with them, and I do. They are usually well meaning, but contrived and, in a sense, fake. I worry that later in life, some of these disabled youth will look back on these “feel good” events and and cringe at how patronizing they were, and wonder how they allowed themselves to be treated as objects of pity and charity. No matter what the specifics, these events are almost always reported in the same sentimental way, so that even when a specific event is really sincere, it still comes off as weepy Inspiration Porn. The worst thing, in a way, is that these are usually “one off” gestures that benefit one especially loved disabled person, while most disabled kids are unaffected.

Let’s be clear. An unstated premise of these gestures is that “normal” high school social rituals are inherently exclusive and off-limits to most disabled students. That is the problem, and these flashy gestures don’t do much to change the situation. It’s like giving a box of extra-tasty chocolates, just once, to starving person, instead of what they need, which is a reliable diet of nutritious food.

In addition, a lot of disabled people themselves find these kinds of practices truly vile and offensive, in a very personal way. And I think it’s important to emphasize that this feeling is real, not intellectualized or theoretical, or deployed merely for rhetorical purposes. And no, it doesnt matter that the intentions are good. We feel it like a gut punch.

On the other hand, I have started thinking that the acts themselves aren’t always so terrible; it’s the way they are reported that makes us gag. In a couple of cases about prom court elections, it seemed like the students sincerely voted for people they genuinely liked, almost without reference to their disability. It's just that the media covered it like it was a charitable act. Still, one or two isolated examples just don’t go far enough when the majority of disabled students are entirely left out of extracurricular activities and social life.

Instead, I would prefer schools to discourage these types of grand, benevolent gestures, and instead take up the long-term and less immediately gratifying job of removing barriers to a full social life for all disabled students.

How? Here are some ideas:

1. Schools should support a wider variety of extracurricular activities, besides the prom and the the most popular sports programs. "Schools should support" means school district taxpayers should demand and agree to pay for more diverse, robust social options that appeal to all kinds of students, including those with disabilities.

2. Schools should create clubs and organizations that are associated with the top sports programs, but serve peripheral support functions and can accommodate non-athletic participants. It's unrealistic to think that chess club, theater companies, and community service groups are ever going to be as popular as football and basketball, so let's create and recognize some real support roles that disabled students ... and other non-athletic students … can play.

3. Make it absolutely clear that all students … including those who don't have dates and just want to go and have fun … are welcomed to attend all of the proms, formals, and other social events. The long term goal here might be to permanently de-emphasize the "coupling up" aspect. Also, it would help to downplay the most expensive aspects, like tuxes, gowns, and limos. Don't ban them, but don't glorify them.

4. Instead of charitably giving awards and honors to disabled people who would probably not qualify under ordinary circumstances, create a wider variety of awards and honors that are honest and real, and which disabled students (and others) can more frequently earn without anyone having to make a “special” effort.

One argument against these suggestions might be that they shortchange students on learning valuable lessons about kindness and generosity. For one thing, that's like saying that we need people to be in poverty so that everyone else can learn to be generous. I would also counter that there are much more important lessons to learn about respecting and including all kinds of people and normalizing those values, rather than treating ordinary decency as some kind special gift that privileged people occasionally bestow on those deemed “less fortunate.”

In short, a little less “Make-A-Wish” and a lot more commitment to deep integration and equality. That’s what we should be shooting for. It’s harder to accomplish, but the long term benefits are far greater than the fleeting results of one or two big, short-term gestures per year. And although wholesale culture change sounds like a near-impossible task, these specific steps in that direction are eminently achievable.

We have to insist on it, not just for our disabled students, but for all of them.

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Disability Politics

I am working on some kind of blog post or article on evaluating election candidates from a disability policy perspective. I’m not ready yet to come out with a definitive list of questions we can pose to candidates, but I have a few preliminary thoughts:

- One of the biggest barriers for the disability community in mainstream politics may be that most of us find it hard to connect our lived experience of disability with either concrete policies or political philosophy. It's second nature for disability activists, but most of us aren't activists. Most disabled people just live their lives and deal with barriers and frustrations in very immediate, personal terms. We need to get into the habit of asking ourselves what kinds of public policies would improve our lives as disabled people. We need to practice asking ourselves, and each other, so we become better equipped to ask the people who want our votes.

- Disability issues should rank higher on the priority lists of candidates, political commentators, and the voting public. However, I don’t think disability will ever rank among the most important and widely discussed issues in American politics. I’m not even sure it makes sense for us to argue that disability should be a top concern.

- I do think it's realistic and completely appropriate for the disability community to someday be a more widely recognized constituency than we are now. Candidates should care about connecting with us and developing distinctive policies that address our needs and concerns … not because they matter much to the country as a whole, but because we are a bona-fide “special interest group” worth courting. There’s nothing inherently wrong with being identified this way. Our concerns are more important than people realize, but they are mainly our concerns, mostly affecting disabled people and their families. Disability issues don't have much relevance for everyone else. That doesn’t mean they are unimportant.

- Most campaigns for national office eventually get around to issuing disability-related policies and positions. Most include “People with Disabilities” on their websites, usually on a drop-down menu of issues or voter groups. Some campaigns take longer to do this than others. Some do it better than others. The real problem is that what they say tends to be generic and non-specific, more about using the right code words and endorsing the usual disability activist themes than about suggesting actual policies. I may feel differently by November 2016, but right now I would much rather hear appalling stuff about lazy cheaters on Disability from someone like Rand Paul, than entirely predictable, or maybe patronizing fluff from a candidate I would otherwise probably vote for. There are legitimate differences of opinion on disability issues. It is better for all of us to discuss them openly and "have it out" than to stick only with candidates who use the right words and an encouraging tone, but have nothing to say.

- Our top priority should be to force candidates to explain how their political philosophies would translate into different approaches to disability policy. If Donald Trump’a positions on disability issues turn out to be not much different than Hillary Clinton’s, or Marco Rubuo’s than Bernie Sanders' then something is wrong. If, on the other hand, we can easily identify which of two unlabeled disability statements is Trump’s and which is Clinton’s, then we will have made some progress, no matter what the policies actually say.

- Despite what I said about disability being a “special interest,” we should connect the dots for voters and candidates between disability issues and the more widely discussed topics that dominate election campaigns. Disability issues connect naturally and in illuminating ways with entitlements, poverty and inequality, employment, healthcare, transportation, education … not to mention infrastructure, law enforcement, and civil rights. Of course, it’s been said a thousand times, but it’s worth repeating that many key disability issues are also aging issues, which demographics suggest should be a much bigger deal in politics as it is.

There will be more about all this from me, I am sure.

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Keep Your Eyes On The UK

There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:

"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."

This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.

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Talk To Your Doctor

Medicare wants to pay doctors to talk about death. Expect political controversy

Sarah Kliff, Vox.com - July 8, 2015.

I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.

That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.

Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."

On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.

The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.

I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?

All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.

Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.

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ADA Anniversary Twitter Event

Share #DisabilityStories on Wednesday, July 15

Ellen Blasco, National Museum of American History - July 8, 2015

As I post this, we are only days away from the 25th Anniversary of the Americans with Disabilities Act. If you have disabilities, if you are related to someone with a disability, or if you are just interested in disability issues and culture, I encourage you to join in a day of Twitter discussion about the ADA, hosted by the National Museum of American History, part of the Smithsonian Institution.

I am still working on a complete ADA Anniversary post, with useful information about the law, memories of when it first passed, and an assessment of how effective, or not, it has been. For now, I will just say that I feel like the Americans with Disabilities Act has had more impact as a moral, almost spiritual victory for the disability community, than as an actual civil rights law.

What do you think? What does the ADA mean to you? What are its strengths and weaknesses? How much of a difference has it made in the lives of Americans with Disabilities?

It looks like the Twitter chats happening all day on July 15th will be a great place to talk about it and find out what others think.

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What’s The Next Big Victory for the Disability Community?

The Supreme Court’s decision affirming gay marriage nationwide has me wondering whether there are remaining unresolved issues that are as significant for disabled people as gay marriage is for the LGBTQ community.

The Americans with Disabilities Act of 1990 qualifies. So does the Olmstead Supreme Court decision that came out of the law later. Although full implementation is very slow and ongoing, those are milestones of our past. What big items are on the disability community's "To Do List?"

Some of my Twitter friends and fellow disability bloggers are noting that many disabled people still can't marry, for legal and bureaucratic reasons. For example:

@POTUS next step is to remove the penalty so people with disabilities can keep needed services and still get marry http://t.co/TKYXHdSYAb

This tweet referrs to “marriage penalties” built into Social Security and other income support programs that make it practically impossible for many of us to marry. Then there are the developmental disability support programs and "group homes" that discourage or outright prohibit marriage and cohabitation.

In both cases, it's not that marriage is illegal for disabled people, it's more like an official disincentive, sometimes an extremely powerful one, that makes marriage a practical impossibility. IF you choose to get married or live together as a couple, THEN we will reduce or stop your support services.

In both cases, it’s also entirely possible to fix the situation by passing laws to address the problem directly. A law could make it illegal for developmental disability programs to refuse service to clients/consumers who decide to marry or live together. A law could specifically affirm cohabitation rights in any sort of long term care facility, including “group homes.” A change in law or regulations could make it so individual Social Security benefit amounts and eligibility for other programs wouldn’t change when recipients marry.

As potential victories go, these are bit wonkish and hard to explain. They aren't as emotionally resonant as yesterday's marriage equality victory, but they probably should be.

A few other longstanding disability issues come to mind.

Ending developmental disability exceptions to minimum wage would be another major victory for the disability community, and possibly more feasible than closing all sheltered workshops. Decisively undoing work disincentives would be fantastic, too, but probably complicated and hard to achieve in a political environment where lawmakers think we are paying out too much in disability benefits. Progress there may have to come piece by piece, one careful legislation at a time.

“Entitlement” is a dirty word these days, both politically an socially. But we might want to rethink that, an explore whether disabled people should have an absolute entitlement to certain key assets … health care, higher education, a drivable car. Solidifying a right to any one these would be a major victory and game-changer for disabled people.

Most of the rest of our problems are either social, and not responsive to legislation … like everyday ableism and workaday bureaucracy, or related to existing laws that suffer from partial enforcement … like the accessibility provisions of the Americans with Disabilities Act and the Olmstead Supreme Court decision.

Aside from dealing with marriage penalties and barriers, and aside from better ADA and Olmstead enforcement, what new disability rights milestones are on the horizon? What major, specific changes do we want to celebrate in the next few years?

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Throwback Thursday

Two years ago in Disability Thinking: NBC Looks At “Sheltered Workshops”.

I’m not sure, but it feels like we are a lot closer to the end of Sheltered Workshops than we were two years ago. Maybe not the end, but a situation where they are quite rare seen as weird, not the standard employment program for developmentally disabled people. For more on this: “Serfdom” and Ending Sheltered Workshops: It Can Work.

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Disability.TV - Ep. 25 - Girls: Jessa & Beedie

In this episode, we focus not on a whole TV series, but a short storyline within a series … the Jessa and Beedie story on HBO’s “Girls.” It starts off as an assisted suicide story, but doesn’t quite end that way.

“Girls" … IMDB.

Photo of Jessa.

Photo of Beedie.

Editorial on Assisted Suicide … By Marilyn Golden of the Disability Rights Education and Defense Fund.

Season 3, Episode 12 Two Plane Rides and Season 4, Episode 1 Iowa … “Girls” HBO Episode Summaries.

Disability.TV Star Ratings Google Doc … Star ratings for every show reviewed on the Disability.TV Podcast.

Jessa

Beedie

Disability.TV Podcast
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Twitter: @AndrewPulrang

Email: apulrang@icloud.com

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What Does The President Think?

This morning I listened to the interview with President Barack Obama on Marc Maron’s WTF Podcast. I enjoyed it. I didn’t hear any potential headlines, (Ooops, forgot about this), but it was interesting to hear President Obama discuss how he manages to remain calm in the face of constant annoyances and disappointments. He certainly convinced me that his supposed “aloofness” isn't because he’s never annoyed and disappointed.

The most interesting moment was probably unplanned. Marc asked the President what about him irritates the  First Lady, Michelle. He cited the habit of being late. And then he explained that Michelle is a stickler for being on time or early for things because her father had Multiple Sclerosis, and always had to get ready for things well in advance. He had to get up hours before most people, just to get dressed on time, and he always arrived at big events, like a basketball game, long before start time because of how long it would take him to get to his seat. President Obama name checked the Americans with Disabilities Act, too, suggesting that this kind of advanced prep was even more necessary before the ADA improved accessibility.

It was a nice moment, where disability was mentioned as both a personal and a systemic issue, but casually, without making a big deal out of it, and seemingly off the cuff.

I would still love to hear President Obama talk at length and in detail about how he views the broad scope and direction of disability issues. I don’t even know if he has personal views on disability policy, beyond the  positions and endorsements we expect from a moderate Democrat in high public office. Maybe it should be a goal for our community … for President Obama to make a major disability policy and vision address before he leaves office.

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Social Security Reform - Followup

Report: Social Security Overpaid Disability Benefits by $17B

Stephen Ohlemacher, Associated Press - June 5, 2015

It looks like there is somewhat more credible evidence now that at least some of the concerns about Social Security Disability are warranted. $17 billion is a lot of money, though it’s worth noting that this is the estimated total overpayment over ten years.

Still, it underscores the importance of disabled people being involved, and maybe taking the lead, in reform efforts. The article mentions the agency recovering $8.1 billion in overpayments, but it costs money to recover overpayments, and “recover” means forcing beneficiaries to pay the money back, with interest. In cases of outright fraud, I don’t have a problem with that. But what about people who are disabled and just worked a few too many hours a week that never got processed properly, or who forgot to report some paychecks, or, let’s face it, maybe never fully understood the whole wage reporting / Trial Work Period / Ticket To Work apparatus and made some easily overlooked but highly costly mistakes?

That’s why simplifying the whole thing appeals to me, along with online reporting of earnings or some kind of automatic tracking that works in concert with the IRS, which gets regular wage reports already. These can sound kind of Big Brother, but I would much rather focus on improving real-time accuracy all around than go for more punitive measures that will satisfy Rand Paul and Orrin Hatch’s craving for pounds of flesh, but perhaps do little to make the system better.

And then there is the sad example of the United Kingdom, which has been putting its disabled people through the ringer for two or three years now, to try and squeeze out the “scroungers” that Daily Mail and Telegraph readers are certain plague their system.

We will need to beware of being co-opted, and of legitimizing really bogus ideas about disability, but who better than disabled people themselves to offer constructive criticism and ideas to make Social Security’s disability programs more efficient and effective?

As is so often the case, the key here is "Nothing About Us Without Us." Usually that's quoted in situations where disabled people are omitted or kept out of important discussions and decisions. In this case, it's probably up to us to join in. Failure to do so may be just as harmful as if we were being kept out.

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On Social Security Reform

Yesterday afternoon I participated in a Twitter Chat on “Social Security Reform," hosted by Career ACCESS, an initiative to boost employment of young people with disabilities.

The Twitter Chat was mostly about gathering ideas about what the problems are how to fix them. Here is a Storify, created by Career ACCESS, with a sample of what the participants said:

This is a great start. It got me thinking about the different reasons people want to reform Social Security. We are not all on the same page on this. I have noticed that depending on point of view, calls for Social Security Disability and / or SSI reform usually have one or more of the following goals:

Ensure greater financial security for disabled people

We can pretty much assume that most disabled people want this, along with anyone else who actually cares about Social Security’s core mission. It is also an interesting opening for testing some of the new thinking about ideas like Guaranteed Income and the effectiveness of alleviating poverty by simply “giving poor people money,” instead of always trying to craft newer, more elaborate social programs.

Make it easier and more beneficial for disabled people to work and pursue careers

Disabled people want this, too. But so do a lot of social workers and others who believe strongly in the moral, spiritual benefits of work, apart from the financial security that comes from a secure, well-paying job. This point of view has the potential to get a little problematic, because it sometimes leads to some shaming of disabled people who aren't working. However, it is also where liberals and conservatives in disability policy find the most common ground.

Reduce overall Social Security Disability spending

It’s far from clear that Social Security Disability is too expensive or running out of money. The most we can say is that disability benefits are, at times, more costly than some people, maybe most people, think they should be. But who's to say what is the “right” amount to spend? Maybe we're not spending enough. That said, if reforms that accomplish the first two priorities also happen to “bend the cost curve," even a little, that would be a good thing for everyone.

Crack down on fraud

Evidence … as opposed to resentful perception … suggests that there is actually not much fraud at all in Social Security programs. Still, a simpler system, with fewer obscure rules, programs, and eligibility criteria might actually save money and reduce the opportunity for actual, bona fide fraud. Not to mention errors, which may be as much of a problem as fraud.

Confine disability benefits to people who are *really* disabled

This what you hear from people who divide recipients into two categories. There are deserving disabled people, and then there are lazy people and scammers, along with with people who have these weird conditions nobody heard of until a few years ago. They are convinced that common sense is all you need to tell who IS and ISN’T really disabled. Some people really believe this. For others, the argument may be a more socially acceptable substitute for what they really think, which is that the whole program is creeping socialism and should be abolished.

I hope Career ACCESS does more of these Twitter Chats. If they do, I hope more people will participate. We need as many disabled people as possible to keep the reform process on the right track.

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See June 6, 2015 Followup

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Signal Boost: "Our ADA Stories"

The Disability Visibility Project is partnering with the National Council on Independent Living for a social media campaign called #OurADAStories.

From the announcement by the Disability Visibility Project:

Purpose

To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.

How To Participate

1) Tweet your story! It can be a written message, selfie or a photo of things you see in your community that relates to disability rights. Be sure use the hashtags #OurADAStories and #ADA25 in any tweets! Follow @DisVisibility for updates.

2) Post an image or written message to the Disability Visibility Project’s Facebook group (you have to join first). If you post an image to this group, please include a written description of your image.

Click here to read more about the campaign.

The idea is to share your personal thoughts, experiences, and feelings about the Americans with Disabilities Act … in words and / or pictures. How has it affected your life? What are the law’s strengths and weaknesses? How has the ADA made your community better for people with disabilities?

This initiative will run from now until July 26, 2015 … the 25th Anniversary of the Americans with Disabilities Act.

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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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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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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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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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Poly Sci For Disabled People

Introduction

Last week The Daily Dot posted an article I wrote, A 2016 candidate's guide to the disability vote.

My aim, frankly, was to get a bunch of stuff off my chest about how politicians handle, mishandle, and squander what could be a real and powerful “disability vote.” Next week, starting Monday, I am going to do something similar here on the blog, aimed at disabled voters and prospective voters.

Disabled people in the U.S. constitute a potentially significant bloc of over 18 million votes ... worth real time and effort for politicians to court. And that's not even counting family, friends, and "allies" who aren't disabled, but may think about disability issues when they vote. We can only fulfill the possibility of real, notable power if we think deliberately about how our experiences and needs relate to politics and policy-making. That means knowing something about how politics work, being familiar with political ideologies, and relating them to the disability experience.

Now, I love politics. It's like a hobby for me. So it’s easy for me, even enjoyable, to think and speak and write about these things. However, most people find politics boring at best, at worst vaguely dirty and definitely disappointing. Whatever you feel about politics though, it does affect your everyday life, even if it isn’t always apparent exactly how.

Over the next week, I’m going to explore some ways that political ideas intersect with our lives as people with disabilities. I hope this will help us engage in politics in a meaningful way. More than that, I hope it will help break down some of the barriers and internal discouragements that tend to make us feel weak, powerless, and needy in the face of “big time” issues and politics. The fact is, we are strong even before we band together … at least as strong as any other constituency you can name. Clarifying a few key issues can, I think, make us a little more confident that we have something to say, and a defensible position from which to say it.

These are definitely going to be my personal opinions, but whether you agree with them or not, I think they all raise important questions disabled people need to consider before voting, especially in the run-up to the next U.S. General Election in November, 2016.

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