ABLE Act Followup: I Guess I'm In ... It's Your Call

I just got an email alert from the Center for Disability Rights, asking people to call their Senators and encourage them to vote “No” on S. 313, which is the Senate version of the ABLE Act. The email provides a good overview of what’s wrong with the ABLE Act at this point:

There are two major problems with this bill:

1. It caps eligibility by age. Only people who have acquired their disability before age 27 would be eligible. There has been no logical explanation for this arbitrary number and the Disability Community does not accept leaving anyone with a disability behind.

2. It includes budget cuts to vital services for people with disabilities. One group of people with disabilities should not have to sacrifice such services in order for another group of people with disabilities to have what they need to survive.  Things that would be cut if this version of the ABLE Act passes include:

Specific oral medication that many dialysis patients with End Stage Renal Disease (ESRD) take would not be covered by Medicaid until 2024.  People will die because of this.

Vacuum Erection Systems (VES) would no longer be covered by Medicare.  This seems trivial, but it is assistive devices such as this that allow some people with disabilities the opportunity to have a family – the same right able-bodied people enjoy.

As I have written about recently, I am upset by the last-minute changes to the bill … both for their practical consequences, and because I think it signals a failure of cross-disability collaboration. That said, I can’t quite bring myself to ask Senators to vote no at this point. If I thought there was a real chance to revisit the changes and fix the bill, I would urge them to vote it down, but especially with two-house Republican majorities on the way I don’t see that happening.

I do hope that Senators who have supported this bill will take a good look at the limitations, and realize that they really are more than just the usual compromise all bills go through before they are passed. The age limitation, especially, fundamentally changes the bill, by cutting out entire portions of the disabled population. I think I would rather have seen the ABLE Act account limits reduced … either to a bit less than $14,000 per year, or to a lower total account limit than $100,000 per person.

So, go ahead and pass the ABLE Act. See how the model works. Make the case for expanding it to the whole disability community. Build on it, or adjust as needed to make it better. But let’s not let Congress and the media celebrate this “rare example of bipartisanship” without acknowledging how it got done. And, next time a bill like this comes up, let’s all make it clear that we won’t accept “divide and conquer” anymore, or be talked into throwing disabled people a bit different form us under the bus.

If you want to contact your Senators anyway, click here to get started.

Things We Say About Disability

We are fine. Yes, we have disabilities, but that makes no difference to our capabilities. Just give us a chance, treat us like everyone else, and we will succeed.

We could be fine, if we had a few basic supports in place, but because of bureaucratic stupidity, the persistence of bad, outdated policies, and general public apathy, we are still denied access to proven services we already know would work for us.

We would be fine, but we are battered and bruised every day by the terrible beliefs, insensitivity, and severely misguided practices of the people around us. Even our families and closest friends sometimes don’t really “get” us.

Listen, sometimes we aren’t fine at all. We hurt. We feel sick. We feel worthless. Some days we can barely get out of bed, and we never know ahead of time when those days will be. When we are at our best, we can do a lot, but frankly, we’re very rarely at our best. Not enough people understand that.

The trouble is, they are all true.

The Best Stella Young Tribute

Dear Stella Young, the world has lost its fizz without you, love Benjamin Law

Benjamin Law, The Age - December 8, 2014

I have been really impressed with how the ABC (Australian Broadcasting Corporation) and other bloggers and news outlets have written about Stella Young after her unexpected death. I have seen barely a whiff of either “inspiration porn” or morbid fascination with the details of her disability. The ABC’s articles were loving and respectful.

Still, Benjamin Law’s article is by far the best tribute I’ve read so far.

Notes On A Vox Article

How Medicaid forces families like mine to stay poor: “You’ll have to get rid of everything.”

Andrea Louise Campbell, Vox - December 9, 2014

It is important to highlight really informative articles on disability that appear in mainstream publications. The general public knows very little about what life with a disability actually entails. Unfortunately, most stories about disability in newspapers, magazines, and news programs focus on individuals and emotion, at the expense of information on broader policy and how it works … and fails … for disabled people across the board.

This Vox.com article is very informative and as far as I can tell, accurate. More importantly, it provides a very good explanation of the income “trap” that so many disabled people find themselves in, because essential supports are part of income-tested programs for the “poor”.

A few thoughts on the article:

- The article is excerpted from the author’s book. It mentions the Affordable Care Act, which suggests that it is fairly recent.

- I was surprised to see no reference to the ABLE Act, a bill very likely to be passed and signed into law in the next few days that would provide at least a partial way around the asset limits described in the article. Unfortunately, recent amendments to the bill might leave the article’s subject, Marcella, out entirely, if she was over 26 years old at the time of her accident. (The article doesn't mention her age, but suggests she was a young adult). If nothing else, the amendment is a good example of how the “social safety net” grew in such a piecemeal way … with lots of arbitrary limits and loopholes added simply to reduce cost.

- Ms. Campbell takes extra care to explain how income and asset “tests” reward low income rather than high. She implies that most sensible laypersons will find this counter-intuitive and strange. It certainly is maddening, but I don’t see why it’s so surprising. Almost all social assistance in the United States is based on economic need, rather than neutral characteristics like disability alone. It’s the way most American voters think they want it … help for people who need help, not for people who don’t. If you make more money, you need less help. That’s the idea anyway.

- Personally, I would prefer a lot less means-testing, even if that meant relatively well-off disabled people getting help, especially for supports almost nobody can afford, like home care and assistive technology. Barring that, though, I think the system could be made fairer and more humane just by revisiting where all the income and asset limits are set, and comparing them to current cost of living in various regions. We don’t necessarily need to overturn the whole system. Making in more economically functional for individuals and families would go a long way.

Another Teacher Lost

Stella Young has died, unexpectedly, at the age of 32. I am shattered. So are a hell of a lot of other disability folk on the Internet.

In a fairly recent TED Talk, Stella pushed back against disabled people being called “inspirational”. A few commenters here and there had the audacity to say that her TED Talk was inspirational. Honestly, I get where they were coming from, but really, Stella wasn’t “inspirational”. She was “fucking amazing”. There’s a difference.

To me, Stella was another teacher. Mostly through her writing, she taught me to really believe rhetoric that I had previously just recited, about disabled bodies … disabled people ... being beautiful.

Weekly Wrap-Up

Sunday, November 30, 2014

• What's Next for the Disability.TV Podcast?

Monday, December 1, 2014

• While I Was Away …

Tuesday, December 2, 2014

• Overtime Pay for Home Care ... What's Your State Doing?

Wednesday, December 3, 2014

• Stella Young’s Letters

Thursday, December 4, 2014

• Season 1, Episode 10 of “Red Band Society”

Friday, December 5, 2014

• The ABLE Act ... Last-Minute Limitations On A Good Idea

Saturday, December 6, 2014

• Learning Humility

Learning Humility

When things like the grand jury decisions in Ferguson and Staten Island happen, I have a thousand thoughts and feelings, and dozens of unique and valuable insights that I’m sure are indespensible, for upwards of 20 minutes or even more! That’s plenty of time to gas on about them on Twitter or Facebook, and cringe about later.

So, I’ve been fretting a bit, (boo hoo, poor me), about how to respond to social justice issues that are not mine, but to which I can tangentially relate in some way. For the most part, I’ve decided to read and absorb, and say little or nothing. When the Staten Island decision came out, I Tweeted a few thoughts about cops and disabled people, but quickly found that they seemed off topic and self-centered.

Then this evening I saw the video below promoted in a Tweet from @NaturentheCity, and I found it really helpful.

I will ask and answer another question that isn’t directly addressed in the video.

What do you do if, as an ally, you disagree with something someone says or does in the movement you are allying yourself to? What if you listen, do your homework, and still find a core concept you don’t really buy into?

My guess is that you should 1. Consider bowing out and shutting up, or 2. Focus on what you do agree with and let the other stuff go.

The most important thing, I would think, is to realize that your contrary opinion is probably something that the others are fully aware of. They’ve heard it before, almost certainly. And even if they don’t hear about it from you, depriving the group of your particular stellar idea probably won’t do anyone any harm. In other words, as exciting and compelling as your thoughts are to you, in all probability they aren’t that novel or important.

That’s hard for me to digest and practice, but it’s the only way I can think of to remain engaged in things as an ally, without constantly and pointlessly pissing people off. 

Besides, as a disabled person, I’ve experienced this from the other side, too. It’s amazing how many non-disabled people seem to sincerely believe that their idea about what will make our lives better is something we’ve never thought of … whether it’s eating healthier and losing weight, or asking a doctor about that pain for the billionth time, or not being so proud and accepting help, or any number of suggestions we’ve all heard hundreds of times … each and every one a brand new idea someone just has to share with us, or the universe will implode or something.

The ABLE Act ... Last-Minute Limitations On A Good Idea

House OKs Bill to Widen Federal Help for Disabled

Hope Yen, Associated Press / ABC - December 3, 2014

I was excited about the ABLE Act from the moment I first heard about it, about 3 or 4 years ago. The ABLE Act is intended to address an economic barrier well known in the disability community and virtually unknown outside it. In order to keep Social Security, and often Medicare and / or Medicaid benefits many people with disabilities absolutely need to survive, they can’t accumulate over $2,000 in savings. This means, among other things, that families have a hard time giving extra financial support to members with disabilities, and adults with disabilities risk losing secure benefits whenever wages they earn get “too high”. Essentially, millions of disabled people are punished for working too much or too hard, or for being thrifty, or saving for an important item, like a car or a house.

The ABLE Act has until very recently proposed to raise the savings limit substantially, allowing disabled people and / or family members to put up to $14,000 per year, maximum total $100,000 away in special accounts for specific independence-enhancing purposes, without that money affecting eligibility for benefits, and tax free as well. It sounded too good to be true. While the bill worked it’s way through the process, I tried on several occasions to dig up a flaw or a misunderstood concept. Always, the answers I got were positive.

Yet, I had a nagging feeling there was going to be a “but” in there somewhere. And there is.

At some point fairly recently … I’m not sure when … the bill was amended to create an age limit on eligibility. It will now only apply to people with disabilities that begin before age 26. That means a 27-year-old paralyzed in a car accident would not be able to use the ABLE Act. As it happens, it also means that a lot of people who get MS won't be eligible, I would think, since that condition typically starts when people are in their late 20s and up. Not to mention people who go blind, lose hearing, have traumatic brain injuries, or any of a myriad of serious disabilities that don't always begin in childhood. All potentially deal with the same work disincentives, and all will now be ineligible for the ABLE Act.

I have also read that in order to make the bill “revenue neutral”, some other disability-related programs will be cut, though I haven’t yet seen the details on that. An organization I greatly respect, the Center for Disability Rights, wants the Senate to vote down the bill, or pass a version that doesn’t have an age limit, and doesn’t cut other programs. I am really undecided on whether to fully advocate that at this point. Let's just say I really hope that the Senators take notice of the changes and see that there's more to them than just the typical horse-trading.

In a practical sense, it’s awful to realize that this bill will basically be of no benefit to several whole subsets of the disability community, purely because of an arbitrary age limit, presumably set to limit the bill’s costs. In  a broader sense, too, I think it reflects another unfortunate thing about the ABLE Act’s history.

Fairly early on, the ABLE Act was endorsed by a wide variety of disability organizations … the “usual suspects” of disability activism you might say … but the real impetus for the bill has always seemed come from parents of disabled "children", and from one particular organization, the National Down Syndrome Society. Maybe when push came to shove, the strongest backers of the ABLE Act may not have given much thought to adults with later onset disabilities. They might have been, perhaps naturally, thinking in terms of developmental disabilities and other conditions most often associated with “children”, and not "other" disabilities like spinal cord injuries, traumatic brain injuries, hearing or vision loss, etc. I don't know what happened or who was involved, but I do notice that a tiny minority of disability advocates is even talking about this last-minute change. It looks very much like some sort of agreement was struck and a consensus arrived at that the cuts and age limit were "okay". Maybe they are worth it, but I have a feeling there weren't many people inclined to argue to the contrary.

Don’t get me wrong. I don’t blame advocates for maybe seeing this bill from a particular angle and fighting for it accordingly. What disappoints me more is the relative lack of enthusiasm and urgency the rest of the disability community showed towards the ABLE Act from the start. I just don’t think we had much of a voice at the table, so when the time came to cut deals, a broader constituency wasn’t there to speak up. I'm not saying other disability groups were excluded, just that they were, perhaps, not sufficiently motivated or focused.

I get the feeling that the newly truncated ABLE Act is going to pass, and that few people will notice how it was changed or what those changes say about how disability-related legislation is developed and advocated. The ABLE Act is being compared, mostly by journalists with scant experience covering disability politics, with the Americans with Disabilities Act. One difference with the ADA is that nearly the whole disability community … all ages, all disabilities … made it the top legislative priority, and for the most part prevented any particular disability sub-group group from being carved out. The ADA isn’t equally effective for all disability sub-groups, but the eligibility criteria were specifically crafted to be radically inclusive, (at least for that time), and to make no real distinction between physically, cognitively, sensory, or mentally disabled people, or between the elderly, adult, or children.

The ABLE Act is a step forward, because it sets up a mechanism to deal with a mostly unintended barrier to greater financial security. But it looks now like it will mainly benefit a vaguely defined “type” of disabled person, and their families, (read: parents), rather than the disability community as a whole … a completely unnecessary limitation on a good idea. That’s a shame and we all ought to be more careful next time not to let it happen.

Season 1, Episode 10 of “Red Band Society"

Red Band Society 1×10 ’What I Did For Love’: Ladies and gentlemen, we’ve begun our final descent

Gotta Watch It! - December 4, 2014

This week’s ‘fall finale’ of ‘Red Band Society’ makes a pretty good case that Fox’s announcement last week that it has halted production … all but canceling the series … may not be a such a disaster for the show’s fans.

Stella Young's Letters

Stella Young's Letter to Herself at 80 Years Old

Stella Young, Sydney Morning Herald - November 22, 2014

Letter to My Younger Self

Stella Young, ABC Ramp Up - October 4, 2013

Links to Austrailan comedian and broadcaster Stella Young's "Letter to My Younger Self" have been popping up on all sorts of disability blogs and websites since last year. Now we have a similar letter by Young, this one to herself at the other end of the lifespan. Together, these letters paint a vivid picture of one disabled woman's wry, spirited observations about life with a disability. At the same time, they express truths and feelings that are immediately relatable for all people with disabilties ... especially those of us with signficant physical disabilities we've had from childhood. Together, these "letters" could also be a useful introduction to an entire way of viewing life with a disability. It is a combination of pride, (so much more than "self-esteem"), self-awareness, clear thinking, humor, and zest for life.

I want every high school age kid in a wheelchair, who uses crutches, or who is sure that their bodies are too weird and messed up to be loved, to read these letters before they graduate into adulthood.

Overtime Pay for Home Care ... What's Your State Doing?

A message for readers in the USA ... though others may find it interesting:

Is your state ready to start paying personal care aides overtime, starting January 1? How will your state's home care programs meet the new Federal overtime requirements? Will they fund the higher cost to maintain current hours of service for everyone? Or, will they try to shave and cut hours of care to stay within existing budgets?

Disability advocates tried very hard to get the new Federal overtime regulations for home care workers postponed, so that states could adjust and ensure that services to disabled people aren't disrupted. However, time has run out. Now all states need to look at how they will meet the new requirements while avoiding unintended, but very possible, negative outchomes such as:

• Reduced hours of services to disabled people, even though their needs haven't changed.
• Fewer people approved to receive home care.
• Disabled people forced by reduced care to move back into institutional settings, or delay returning home from them.
• Fewer hours and fewer overall job opportunities for home care workers.

Let's be clear about this. If states do adjust their budgets to accommodate paying home care workers overtime, without reducing services, that could be a big win for everyone. Disabled people who rely on home care generally support their aides being paid better. What we are worried about are the unintended consequences of adding a higher pay requirement to a program that relatively few people in government fully understand. They mean well, but it seems like they just don't get how the economics of home care, which is paid for mainly by state governments which each decide their own policies and budgets. For the most part, home care recipients have no ability to simply decide to pay their workers higher wages or overtime. It isn't their money. It's mostly the states'. Now, all 50 of them need to pass legislation to meet the requirement without harming disabled people or their home care workers.

That's a tall order, politically, and like it or not, it puts disabled people in the middle, in a situation where doing what many would consider "the right thing" ... paying home care workers overtime as other employees are paid ... isn't really up to them, but where they could easily bear the brunt of the decision either way.

Anyway, if you care about home care and its vital role in supporting independence for people with significant disabilities, find out who's working on this in your state right now and ask what you can do to help.

While I Was Away …

I took a little over a week mostly off from blogging. My break included not reading much about disability matters. Here are some of the best articles I’ve been catching up with today:

Congress finds cause to agree on: Disability assistance

Susan Davis, USA Today - November 26, 2014

This makes me happy. However, I still would like to see a more thorough analysis of who will be able to use the ABLE Act and for what. Most coverage and advocacy for the bill focuses on developmentally disabled people and their parents wanting to put money aside for them, without disrupting their benefits eligibility. There are also allusions to the ABLE Act helping with work disincentives, but it's not clear to me how far that will go. Will disabled people of all sorts be able to work at most any job without losing benefits like Medicaid or even Social Security? Or will this feature mainly affect people in the lowest wage jobs, or people born with developmental disabilities? To me the lack of clarity on this is another indication that lawmakers are still more responsive to families of people with disabilities than to disabled people themselves ... the awesome Sarah Wolff notwithstanding.

On Disability and Accepting Help

Sarah Kovac, The Atlantic - November 17, 2014

I appreciate this very personal take on one of the most common dilemmas of disability. Does accepting help and using specialized tools free us, or make us more dependent? I think one reason why so many of us resist "accepting help" is that there is this vocal minority of non-disabled people who feel it is their mission to get us disabled to "stop being so darned independent!" The blaming and shaming that comes our way on this can be astonishing. On the other hand, there is an equally loud and obnoxious chorus of other non-disabled people ... like the old man in Kovac's parking story ... who believe that the best thing for us is to do for ourselves and "stop using your disability as a crutch!" Another example of this is the younger disabled people I've met thru Twitter, Facebook, and Tumblr who catch tons of flack from their parents when they decide to start using a cane, walker, or wheelchair to make their mobility easier, more practical and less painful.

In my adult life, I have had little problem using adaptive tools and accepting help from people on stuff related to my disability. My real weakness is that I then tend to put off asking for help on things that are not connected to my disability. I seem to think that since I need help with disability things, I shouldn't need help with things that aren't affected by my disability. That kind of flawed thinking has got me into trouble several times.

Access on Amtrak Train: New York to Washington D.C.

Emily Ladau, Accessible Travel Worldwide - November, 2014

One of my favorite bloggers, Emily Ladau, gives an impressive endorsement of Amtrak's accessibility and friendliness to disabled travelers. Her article reminds me of one of the most valuable long-term advocacy accomplishments we had at my local CIL. There is an Amtrak line that runs from New York City north to Montreal, Quebec. North of Albany, none of the stations have built-in accessibility, and many of the stops are only staffed at all when trains are due, so the infrastructure is very ad hoc. As a result, there was a huge stretch of this line that was well nigh unusable by people with physical impairments. On paper, Amtrak promised accessibility and accommodations, but in practical terms, it was a gamble with the deck stacked against you. It's still a bit of a risk, I think, but we at least got Amtrak to focus on each of the stations between Albany and Montreal, and make specific equipment, training, and policy changes that at least make decent access possible.

15 Things You Should Never Say To An Autistic

Lydia Brown, Autism Women’s Network - February 27, 2012

I am A. fascinated by autism, B. still somewhat under-informed about it, C. prone to embrace stereotypes of autism that show up in popular culture, and D. afraid to say stupid / offensive things about autism. So, this article is just right for me. Based on Lydia Brown's impeccable credentials as an activist and her personal experience with autism, I feel confident taking the advice in her article.

The New Abnormal

Emily Nussbaum, The New Yorker - December 8, 2014

I found out about this article when I noticed an interesting Twitter conversation going on this morning between Nussbaum, (one of my favorite pop-culture critics) and a few disability bloggers I follow, who always have interesting things to say and questions to ask about disability in entertainment media. I read the article then joined in the discussion a bit. As I noted to the others, I still haven't started watching "American Horror Story: Freak Show". I'm procrastinating for two contradictory reasons. I am worried that despite maybe being a great show, it will be intolerable to me, personally, because in the 1950s under slightly different circumstances I might have been a "freak". In social justice parlance, it might "trigger" me. On the other hand, I may find that it's brilliant, insightful, and provocative about disability, in a good way, but that I will have a hard time justifying that to people who see it as little more than amped-up blackface. Obviously, the thing to do is watch it with an open mind and say what I really think and feel about it. I've got a great incentive to do so, as the great disability podcaster Jane Hash has agreed to do a podcast discussion of the show with me this month. So, I'll get to it. I promise!

What's Next for the Disability.TV Podcast?

There are 16 episodes of the Disability.TV Podcast so far. I’ve had some terrific guests to talk about some interesting TV shows that have disabled characters. Some we loved, some we liked, some were disappointing, and some I change my mind about approximately twice a month. I have also received some really interesting feedback on the episodes so far, that I think will help me make Disability.TV a better, more engaging podcast. I’ll have more to say about that next weekend, when I plan to post the 17th podcast episode.

Since I have lost the original calendar of episode topics I had all planned out, now is probably a good time to reassess where to go from here. What other TV shows should I discuss next? Are there other topics related to disability on TV worth exploring? Which topics are listeners most looking forward to?

To answer that last question, I have put up an online survey at SurveyMonkey. It would help a lot for as many people as possible to complete the survey so I can make my plans with some sort of direction.

[Click here to complete the survey]

The survey has two parts:

First, which TV shows with disabled characters would you like me to cover? Here is a list of possibilities, with a note on the disabilities portrayed:

Parenthood

Autism / Asperger’s

Red Band Society

Amputation, chronic Illnesses

American Horror Story: Freak Show

Various physical deformities

Deadwood

Cerebral Palsy

Downton Abbey

Mobility impairments

House, M. D.

Mobility impairments, chronic pain, drug addiction

Star Trek Franchise

Various disabilities over 5 TV series

The West Wing

Multiple Sclerosis, Deafness / Sign Language use

Derek

Intellectual disability (unspecified, not clear?)

Carnivale

Various physical deformities

Becker

Blindness

Push Girls

Paraplegia / wheelchair users

Britain’s Missing Top Model

Various disabilities

Breaking Bad

Cerebral Palsy

LIttle People, Big World

Family that includes several Little People

Life Goes On

Down Syndrome

I, Claudius

Cerebral Palsy, stuttering

Second, which other topics would you like included in the podcast. For example:

Familiar disability tropes and clichés.

Disability in comedy.

Disability in sci-fi and fantasy.

Disability in horror.

Disability on reality shows.

Disability on shows for kids.

Supporting and guest characters with disabilities.

Cognitive impairment on TV.

Sensory impairment on TV.

Physical impairment on TV.

Mental illness on TV.

Aging on TV.

What is "representation" and why does it matter?

Should disability depictions on TV be realistic or idealistic?

How important is it to cast disabled actors in disability roles?

How important it is to for portrayals of specific disabilities to be completely accurate?

In each section of the survey, you can also make your own suggestions of TV shows and topics.

I’m looking forward to getting lots of feedback and suggestions!

[Click here to complete the survey]