Return Of The "Pool Noodle?"

School bans blind girl from using her walking cane – for fear of tripping up teachers
Emma Lazenby, BT.com - November 17, 201

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

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The Way Of The Advocate Is Hard

One of the reasons why strong, vocal disability advocates get more negative than positive response in social media ... such as when they criticize Inspiration Porn ... is that most people find strong, critical, negative opinions on any subject to be unattractive. Advocates can shape attitudes over time. They can bring about important policy change. A significant minority of people actually admire advocates and love what they do. But on just about any issue you can name, advocates and social critics who speak their minds are rarely liked.

This phenomenon is a bit more intense and hypocritical in the disability sphere because of the unique characteristics of ableism. But I don't think the backlash is much worse or all that different from the responses people get when they express challenging opinions on race, gender, politics, religion, economics, etc.

So what?

Well, it suggests that if you're going to be an advocate, especially in the realm of disability, don't be surprised if you catch a lot of crap for it. If you're very good at it, and articulate, you might gain a small but loyal fan base within the activist community. If you're smart about strategy and don't take things too personally, you can succeed in what you set out to do. But if you venture out into the wider public discourse, don't expect to be either liked or admired. Change is uncomfortable. Most people don't like to be uncomfortable. And people absolutely hate it when the people they think they are helping are the ones making them feel uncomfortable.

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Some Things Should Be Easy To Fix

Dad Regularly Carries Son With Disabilities Into School Because Of Disabled Parking Bay Row

Amy Packman, Huffington Post UK - October 2, 2015

So much stupid ...

If we take this Geoff Pearson at his word, his whole objective is to get his council government to stop being sloppy with local codes, like how to mark a disability parking space properly. Now, he may be using this technicality as an excuse, but have a hunch that he isn’t. There’s someone like him buzzing around every municipality ... obsessively concerned with procedure, and sort of oblivious to practical outcomes and how they affect actual people.

Of course, none of this would be an issue at all if the local council would get its act together and repaint the parking space the proper way. Public officials don't like admitting mistakes though.

There’s not much you can say about the Wallaces. Not being able to park in that space clearly causes a problem for them. At first I didn’t understand how a school could have so little parking, but I live in a small US town where schools sit on extensive grounds and have dedicated parking lots. Edinburgh is a centuries-old city, where I guess at least some schools have only street parking.

I usually advocate dealing with these kinds of disability issues systematically, through official channels, formal complaints, and policy analysis. In this case, though, it seems like what’s missing is some basic human decency and one-on-one communication:

Mr. Wallace: “I know you have a beef with the council over that parking space, and I sort of agree with you. But could you just not park there? I really need the space so its easier to take my son to school."

Mr. Pearson: “Sure, okay. Sorry."

Or how about this:

Council Executive: "We won’t be taking up new parking issues until January …"

Mr. Wallace: “It’s just a mistake in how it was laid out and painted. Can’t you just fix it now?"

Council Executive: “Well, okay, I guess we can.”
Mr. Wallace: Ta!

Kind of a Kumbiaya scenario, but is it really all that unrealistic? We get so caught up in processes and making points that I think we sometimes pass up opportunities to just solve stuff like human beings.

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Celebrate Access Equality, September 26, 2015

I have been seeing Facebook posts and Tweets from disability blogger, activist, and filmmaker Dominick Evans, about a multifaceted event he’s been planning for September 26, called Celebrate Access Equality. For some reason, I kept mentally noting it and then promptly forgetting about it. I can’t keep track of every disability rights event, and even if I could, I don’t have the time and energy to dive deep into all of them. So this one slipped to the back burner.

Today I got an email from Dominick, which he sent out to a whole bunch of online disability activists and bloggers. I read it, and basically, I’m in! This event is going to be well worth the time and effort, no matter what kind of disability rights activity you are into. Here is Dominick’s email.

Hello Everyone!

I hope you are well! I’m writing to tell you about a project I’ve been working on the last several months. I am working with others with disabilities around the world to promote a day to educate and inform about access barriers. I believe that the vast majority of discrimination people with disabilities face is due to lack of access.

In my mind, access isn’t just about physically being able to move around this world. Access barriers can be mental and emotional. Access barriers can include stigma and oppression. As such, something needs to change. We need to make the  world aware of access barriers, so that real change can be made. That is the idea behind the day of Access Equality.

Participation can occur anywhere in the world. There are a variety of ways to participate. These include:

-blogging

-sharing our FB page located here:  https://www.facebook.com/AccessEquality

-tweeting about access barriers using  #AccessEquality

-contacting state and federal government representatives

-protest in your own community

-sign petitions relating to access barriers

-rate a business for accessibility on apps like AXS Map and AbleRoad

-support organizations holding protests, actions, and events on September 26 by sharing their updates

We’re also planning events throughout the day, including a twitter chat, and live streaming.

We are offering two gift cards on Amazon to encourage participation. One person will randomly be selected from those who choose to blog, and one person will be selected from those who take pictures in their community and post them to our FB page and/or using our #AccessEquality. Participants do not have to be disabled themselves, although we heartily encourage individuals to share their own personal experiences with access barriers!

The idea is to create so much content and noise on September 26 that it is too hard not to notice us.

You can find more ideas and information here:

http://www.dominickevans.com/2015/09/celebrate-access-equality-on-september-26/

I could really use your help. Please share this information with your networks and encourage participation. Please also consider participating. We need your voices!!

I appreciate your consideration and possible participation.

Thanks,

Dominick

I plan on joining in the Twitter discussion on September 26, posting a blog post here at Disability Thinking on that day, and helping promote all of the above activities.

Most of all, I plan to help Dominick kick off a really significant push for disabled people and disability activists to enter hundreds, maybe thousands of businesses into online accessibility mapping tools like AbleRoad and AXS Map. Nothing is definite yet, but it looks like our best bet will be to use AXS Map, which has a feature that keeps track of group mapping efforts.

To review ...

These mapping tools use existing Internet-based maps and consumer review sites like Yelp to form the basis of easily consulted reports on accessibility at businesses and other public facilities. Both programs can be added to and consulted on a PC’s web browser, and both also have accompanying mobile apps, so you can enter reviews immediately, without having to take notes and enter them later. Anyone can go to one or both of these sites, download the apps, and get started. If you’re still foggy on how this works, check out this video:

Our tentative plan is to set up a Mapathon at AXS Map, and invite people to register (for free) and commit to enter a certain number of site accessibility reviews. We are thinking we will use September 26 for the kickoff, with an end date of December 31. As soon as the Mapathon is set up, we’ll announce how to get started.

Meanwhile, here is some additional information about the September 26 Access Equality Day:

Celebrate Access Equality on September 26

Dominick Evans - September 14, 2015

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I Was So Young ...

This morning, a disability activist here in Plattsburgh emailed a bunch of people this Op Ed piece I wrote for the Plattsburgh Press-Republican newspaper about the Americans with Disabilities Act, just before it was signed into law on July 26, 1990.

When I saw what it was, I had a moment of dread. I couldn’t remember writing it, and I wondered if it would be embarrassing. In fact, it’s not bad.

On thing I noticed is that there are actually very few people making the libertarian argument against the ADA anymore. Apart from a few think-tank theorists, hardly anyone uses the ADA as an example of government overreach anymore. That’s a good thing, but also a bad thing. It’s good that we mostly don’t have to deal with ideological opposition anymore. But it’s also disturbing because it is further evidence that most people don’t see the government as an active participant … a cheerleader maybe, but nothing anyone feels afraid of anymore.

Any residual venom seems to be reserved for a few lawyers, and for disability activists.

Anyway, enjoy this pre-ADA, pre-Web, pre-Blog, pre-Disability Thinking snapshot from the archives.

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Weekly Reading List - Happy Birthday ADA Edition

This week I am posting links to articles I have collected the 25th Anniversary of the Americans with Disabilities Act. The “mainstream” press rarely covers disability issues in any sort of depth. That’s why I decided to stick with the more journalistic pieces, even though most of what I have read about the ADA this week was on personal disability blogs and social media sites.

A NEW 'COMMON IDENTITY' FOR THE DISABLED

Joseph P. Shapiro, Washington Post - March 29, 1988

This is a good place to start … an article on the ADA from 1988, just before the first bill was introduced for the first time.

The Americans With Disabilities Act Is Turning 25. Watch the Dramatic Protest That Made It Happen.

Samantha Michaels, Mother Jones - July 25, 2015

It’s all about the video above, which I have posted before on this blog. As the man in the video says, there’s a fine line between empowerment and pity. I think there are two key factors. First, it seems like the capitol crawlers wanted to do it, and came up with the idea themselves. Second, they did it for their community, not for themselves.

Why I wrote the Americans with Disabilities Act

Robert L. Burgdorf Jr., Washington Post - July 24, 2015

This is the kind of history I love, and I’m amazed at how little I knew about the origins of the ADA. But to me, this is the most important sentence:

“After conducting consumer forums around the country, NCD concluded that discrimination was the biggest problem facing those with disabilities."

It’s easy to forget what a radical conclusion that was at the time. For many today, it’s still a surprise and a revelation that disability discrimination is, in fact, worse than disability itself.

In Helping Those With Disabilities, ADA Improves Access For All

Joseph Shapiro, NPR.org - July 24, 2015

News stories about ADA lawsuits usually make them sound either vaguely sleazy or unrealistic and selfish. This article shows how lawsuits are sometimes necessary to move progress along, and ensure justice for individuals who need it.

25 years after passage, Americans with Disabilities Act has improved the lives of millions

David Crary, Fox Business / Associated Press - July 25, 2015

This is a very good overview of the ADA’s history and effect, taking into account both praise and criticism.

In 25 years, ADA broke down barriers for the disabled, but the workplace is the next frontier

Lorraine Mirabella, Baltimore Sun - July 25, 2015

The Title I employment provisions may be the least successful part of the ADA, if success means a major shift towards employment for all people with disabilities. But I don’t think the ADA was really designed to deal with macro-level employment gaps. It’s better suited to dealing with very specific individual employment matters. And as a civil rights law, the ADA has nothing at all to do with preparing people for jobs. It removed some barriers to entry, but it was never meant to push people through.

America still leaves the disabled behind

Ananya Bhattacharya and Heather Long, CNN Money - July 26, 2015

Reading about the blind man at the start of this article, I wonder for the millionth time why there aren’t more disabled people who file complaints and sue under the ADA when faced with such straightforward discrimination and lack of accessibility. But it takes resources to pursue complaints and lawsuits, neither of which are likely to make the plaintiff more employable. Especially with employment discrimination, there’s something missing in the ADA, but I don’t know how it could be fixed.

Why Disability And Poverty Still Go Hand In Hand 25 Years After Landmark Law

Pam Fessler, NPR.org - July 23, 2015

Did the ADA make it harder for disabled people get jobs? It’s an interesting thought that makes some kind of sense, but I’m not convinced the law has been a net negative. After reading this article, I have the feeling that for many of us, the problem is that we are distracted by so many little inaccessibilities, discriminations, and disincentives before we even get to the workplace, and I think employers sense that. They might not think, “I don’t want to hire a disabled person,” but they will think, “This person’s life is too complicated, how would she stay focused on the job?” If the rest of our lives were smoother and more secure, I think we’d be more convincing in the job market.

Woman in wheelchair who fought for Disabilities Act can’t use tour bus

Petula Dvorak, Washington Post - July 20, 2015

I agree with Dot Nary’s strategy of letting smaller businesses go with some education, while saving really aggressive advocacy for the big companies that “should know better.” In rural towns like mine, though, that might not be enough. The bigger companies are all on the outskirts of town, and are mostly accessible by now. It’s just that a lot of disabled people can’t get there. The businesses they can reach tend to be smaller, in those old downtown buildings that ALL have steps up and narrow doorways. Eventually, something has to be done about them, too. And after 25 years, “eventually” is, arguably, now.

***

I have to say I’m disappointed that neither of my two favorite news websites, Vox.com and FiveThrityEight.com have posted anything about the ADA anniversary. I wonder if these were conscious editorial decisions, or just carelessness.

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Time For A New Addition To The ADA

The Community Integration Act - Fact Sheet

American Disabled for Attendant Programs Today, (ADAPT)

The Community Integration Act looks like a good candidate to be the next big legislative goal for the disability rights movement. It might even be the biggest deal since the Americans with Disabilities Act, which is appropriate since it’s being presented as a 6th section of the ADA itself. It would add much bigger teeth and operational specifics to the Supreme Court’s 1999 Olmsted decision, which was an interpretation of the ADA.

The Community Integration Act would make every state:

"... provide community-based services first, and offer home and community based services to people currently in institutions as a civil right. CIA requires states and insurance providers that pay for long-term services and supports to make real and meaningful changes that support the right of people with disabilities to live in freedom."

You can read all about it at the link above, but the premise is fairly simple. The Community Integration Act would strengthen the principle that people with disabilities who need “nursing home level” of support services have the right to get those at home. They wouldn't have to move into a nursing home or other “care facility” simply because they can’t get enough hours of home care … or because they don’t want their family to spend hours every day supplementing their care ... or because their state has decided not to fund more than X number of hours per day of home care ... or because a doctor or nurse decides they aren’t safe where they are for some reason. It would be as close as we are ever likely to get to an absolute right for every disabled person, no matter how severe their disability, to live in their own place, if that’s what they want. Disabled people would no longer live in institutions "because that’s all there is."

A new version of the bill hasn’t been introduced in Congress yet. The disability advocacy group ADAPT says that Sen. Chuck Schumer is interested in supporting the bill, but “needs a little push."

Click here to Take Action ... Urge Sen. Schumer to introduce the Community Integration Act before July 23, 2015.

With #ADA25 it's time to tear down the walls that trap us in institutions @SenSchumer It is time to MAKE history with #CIA4ADA

— Bruce Darling (@ADAPTerBruce) July 16, 2015

I am sure there are a thousand details and questions to flesh out. How will the Community Integration Act apply to people with developmental disabilities? Would any additional funding be provided? How, exactly, would the affordable housing part of the bill work?

Whatever the answers to these and scores of other questions, I really think this is a great start at finally slaying dragon … putting and end all unwanted institutionalization. Let’s get started.

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It's Refreshing

Why disability rights is everyone's business

Jeffrey Pfeffer, Fortune - July 14, 2015

Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.

What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.

We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.

Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.

It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.

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Stuff That Worries Me

I’ve decided to start a new recurring feature called "Stuff That Worries Me."

Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.

My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.

Here’s the first one:

Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.

On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?

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Awareness Or Activism?

Minister fails to solve mystery of Swansea’s ‘Disability Confident City’ accolade

John Pring, Disability News Service - July 3, 2015

You don’t have to understand the intricacies of disability policy in the UK to realize that this article is about the enduring conflict between two approaches to disability advocacy … Activism vs. Awareness.

There are many ways to define these terms. What we see here is two different ways to accomplish roughly the same goal, significantly improving employment prospects for people with disabilities.

The Awareness approach is to persuade employers to hire more disabled people. It’s based on the assumption that the unemployment is high for disabled people mainly because employers don’t understand disability and harbor misconceptions about the capabilities of disabled people. If we can just reach all he employers, sit them down, explain where their thinking is off base, and maybe introduce them to a few highly capable and charismatic disabled people, then things will change for the better. All this requires maintaining more or less friendly, patient relations with employers. Employers don’t have to attend our seminars, and in fact, hiring itself is basically a matter of choice, not obligation, so accusing and alienating employers won’t help.

The Advocacy approach focuses more on structural issues that hold down employment of people with disabilities. This may include work disincentives, (in which you actually lose money due to reduced benefits when you take a job), a mismatch between open jobs and applicants’ qualifications, inaccessible workplaces, and both deliberate and unconscious discrimination. After decades of anti-discrimination laws that often seem toothless, it is easy to conclude that employers will never change their practices unless forced to do so. In this view, disability awareness seminars, corporate-level networking, and aspirational slogans are wastes of time. Worse, they can function as cover for people who don’t want to do anything of substance, but need to appear as if they are.

The Awareness approach is generally optimistic, but runs the risk of being naive, and coopted and hijacked by the people we are trying to persuade. As the article linked above suggests, it is frighteningly easy for bureaucracies to cynically adopt progressive rhetoric that bares no resemblance to their policies and practices.

The Advocacy approach is, at least on the surface, pessimistic, and many people unpleasant, but may be more realistic and effective when carefully targeted. Personally, I prefer Awareness as an activity, but I have more actual faith in Activism to actually accomplish things.

Within the disability community, these two approaches are not just strategies, they are separate subcultures.

Activists and awareness people rarely work together or talk to each other. And people seem to gravitate towards one or the other approach naturally, based as much on temperament as philosophy. Some of us enjoy teaching and shmoozing. Others prefer campaigning and protesting. For some, asking people to change feels like begging. Others don’t like the anger and sometimes irrationality they perceive in activism. It is both a strategic and a personal choice.

I still think there are arguments on both sides when it comes to improving the employment picture for disabled people. I’m skeptical that mere persuasion and “disability awareness” will ever make much of a difference in employment. Yet, I’m equally doubtful about how effective any sort of hiring quota or mandatory system would be in the long run. Both approaches seem rather futile to me.

How do we dramatically improve employment for disabled people? It’s one of the few disability rights questions I really don’t know how to answer.

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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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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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Diagramming Disability Issues

Commissioners support airport parking fee change for disabled

Angelia Davis, Greenville Online - June 16, 2015

The issue discussed in this article isn’t very important, but it got me thinking about how we classify disability advocacy issues. I would like to offer a model.

I think that one way to look at any disability issue is to ask two questions:

1. Is it about rights or benefits?

and

2. How high or low are the stakes?

Let’s get really nerdy about it and draw a diagram:

Now let’s add some of the more familiar disability issues:

Free Airport Parking seems like a fairly Low Stakes issue, though not extremely low because some disabled people probably do travel a lot, and suddenly having to pay for parking will probably affect them quite a bit. It is also pretty firmly a Benefits issue, and only a matter of Rights if you believe that inexpensive parking is a right that disabled people should definitely have. Personally, I think the answer is, or should be, a qualified “no.” In the same quadrant but a bit lower stakes I placed Special Event Discounts … those discounts often given out at theme parks and county fairs and such. They are almost more like charity than rights, and of little real consequence to the disabled community. Whether you think they are nice gestures or whiff of condescension, either way they don’t change anyone’s lives.

To me, Accessible Parking belongs in the Rights / Low Stakes quadrant … clearly a Right, and of comparatively low importance. However, I would place it close to the High Stakes area. It’s important to some of us, on some occasions, and when we need it, Accessible Parking is very important indeed. But it’s probably not as important as the outrage and publicity surrounding it, especially generated from non-disabeld people. For some reason, it’s the one issue they consistently want to advocate for on our behalf.

Minimum Wage and Social Security Disability funding belong in the lower right quadrant, as they both mainly concern Benefits, (i.e., money), and directly affect disabled peoples’ ability to live independently and prosper in the community. There are Rights elements to both issues, though Minimum Wage is somewhat more about Rights than Social Security. Minimum Wage should be a Right, whether or not it amounts to a whole lot of money for any particular disabled person.

Finally, take a look at the High Stakes, Rights area. Home Care Funding is mostly a Rights issue, but also very much about monetary Benefits. It is also very clearly a High Stakes matter, as for many of us, Home Care is the keystone of our entire way of life. Without it, we can’t live where we live, and can’t do anything we usually do. Loss of Home Care can even shorten our lives. Stakes don’t get higher than that. Building Accessibility is even more of a pure Rights issue, not really a Benefit at all. And it’s important, but perhaps not always as High Stakes as a life-and-death issue like Home Care.

These are all personal judgment calls. It’s not an exact science. But figuring out the “location” of various disability issues might help us understand them better.

Also note that this model doesn’t include cultural issues, like “Inspiration Porn," or interpersonal issues, such as the terms people use to refer to disabled people. Maybe sometime I’ll try making a diagram of some sort for those.

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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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I Almost Overlooked A Worthy Petition

"Make Drew Feel Incredible (because he is)."

"Everyone deserves the opportunity to feel special."

These are the first two lines of text I read of an email from Change.org. My first though was, “Oh, no! Another non-disabled brother, sister, or parent asking people to please, make a disabled kid’s day by helping them rack up a million “Likes”, or voting for them to win some “special hero" contest they’re about as likely to win as being struck by lightning. I see stuff like this a lot on Facebook, and occasionally in emails, too. They make me feel rotten because the intent behind them is obviously good, but the neediness implied underneath is nauseating.

Then, for some reason, instead of trashing the email, I read it more closely. First I noticed a sub-headline I’d missed because the text was a sort of gray color instead of black. It reads:

"Petitioning Warby Parker"

Now, because I listen to a few hipster podcasts, I know that Warby Parker is an Internet-based mail-order company that sells glasses. Apparently, you fill out a style preference questionnaire online and they send you several pairs of actual glasses of different styles for you to try on at home. You keep the one you like and send the others back. And of course, they’re all meant to be absolutely in style, especially, I’m guessing, for millennials and hipsters of all ages.

So, now I’m intrigued.

I read on, and discover that this is a petition to get Warby Parker to offer some more in-style frames that fit some of the unique face-nose-ear shapes and sizes common to people with Down Syndrome. The creator of the campaign, Bre Whitehead, appears to be the sister of a young man with Down Syndrome who she says, "has a killer fashion sense, and likes to be on trend.” He can’t get cool looking glasses though because none of those designs as currently offered work for his smallish ears and nose bridge.

Having a body that doesn’t match up well with clothes I’d like to wear is familiar to me. So, I’m sold. This is brilliant and amazing and here is why:

- If the petition succeeds, this will make Andrew (the brother, not me) feel special, but in a way that is very specific to his personality, not in some generic or essentially meaningless way, like a million “Likes” or a pizza party or something.

- The petition also calls attention to a very specific, probably not well-known, but really meaningful barrier to the general happiness and freedom of expression of people with a certain kind of disability. Assuming what the sister is saying is more or less true, an entire group of people being stuck with ugly specs is a big deal, especially when they, especially benefit from standing out visually in unique and expressive ways.

- Because we’re talking about cool glasses and not food, clothing, shelter, or healthcare, there’s probably nobody else even thinking about addressing this issue.

- The petition targets a company that can do something about it … if it’s possible to do so … and one that professes to exist partly to be altruistic.

- Andrew will feel special, and so will other people with Down Syndrome, because they will have more choices than before. Choice is something a lot of disabled people don’t have, because we need a thing, but they only make one kind of that thing that will work for us, if we are lucky.

- Finally, I love that Ms. Whitehead isn’t asking for something just for her brother. She’s linking what he needs with what a lot of other people like him probably need (and want!), and aiming for a systemic solution, not an individual gesture of charity.

The reason I am making such a big deal out of this is that because i first mistook this email for a syrupy disability beg, and then realized it was sort of the opposite, it helped me think about the difference between the two approaches people take towards “helping” disabled people. From a distance, people might not see the difference. But it’s night and day to me.

I’ve signed the petition, and so should you.

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