Not So Brilliant Maybe?

I’ve been thinking a lot this week about disability “innovations” that aren’t as great as they seem to be. For example:

Special ID cards and police registries for disabled people

Parents of autistic and developmentally disabled children have been pushing for practical solutions to the risk of police violence against their disabled kids. One of the more popular ideas is creating I.D. cards developmentally disabled, and deaf people can carry that explain to police that they are disabled, and so may not behave in expected ways when confronted by police.

Grid of four different disability symbols with a light bulb image over them

This is one of those disability-related “innovations” that can seem practical and sensible, but only if you have a certain kind of idea about what the problem actually is. If disabled people’s tragic encounters with police are solely about miscommunication and lack of information about specific disabilities, then informational I.D. cards make sense.

However, if you factor in deeper, more entrenched ableism, and especially racism, then I.D. cards seem not only inadequate, but possibly dangerous.

Police are first and foremost people, who live in the present society, and carry the same kinds of ingrained prejudices other people have. These prejudices may be slightly reduced or short-circuited by training, but it’s doubtful at best that they can be completely undone. In tense law-enforcement situations, police officers may not take the time to read and absorb the information on an I.D. card, and may in any case react on instinct, complete with lifelong prejudices. And it’s certainly not unheard of for people in positions of authority to doubt the validity of people’s “special” claims of disability. Just look at the doubts people have about paperwork, insignias, and “certifications” for service animals and “handicapped” parking. People are suspicious that these things are obtained dishonestly. It’s not hard to imagine an officer thinking that a disability I.D. card might be misused.

Even more simply … what do we expect could happen when a developmentally disabled, autistic, or deaf person, with a gun pointed at them, moves to retrieve and show an I.D. card? Would police be reassured when a suspect puts their hands in their pockets or into a purse for their I.D. in a high-tension situation? And yeah, it’s only sensible to ask, what if the person is also black?

Disability I.D. cards seem to be another solution thought up by people with a basic trust in authority and rational communication … neither of which is very reliable in police encounters these days.

Wheelchairs that climb stairs

A few tech inventors have been trying for years to perfect and market a stair-climbing wheelchair. People who are excited about them seem to have one or two main reasons for their enthusiasm:

1. They are fascinated by new, high-tech solutions to the problem of poor accessibility. They’re cool!

2. They gravitate towards individual solutions that don’t depend on broader and seemingly harder to achieve improvement in physical accessibility,

Pessimism about the social goal of universal accessibility leads them to seek a personal way around the problem.

Meanwhile, it’s interesting and possibly significant that non-disabled people seem overall to be more interested in stair-climbing wheelchairs than actual wheelchair users.

Then there is the implied evasion of the social responsibility to promote general accessibility. If these cool wheelchairs somehow become standard equipment for wheelchair users, maybe we can all stop worrying about accessibility. Intentionally or not, this reinforces the idea that disability is a personal problem that disabled people are responsible for adapting to, not a social problem for society as a whole to deal with.

The problem is that these wheelchairs are only ever likely to be practical and affordable for a handful of wheelchair users. They are no use at all for people who are mobility impaired but aren’t wheelchair users, and no use to people who can’t afford these wheelchairs’ huge price tags. Also, they don’t seem practical for anything but climbing stairs. They don’t look suited for everyday wheeling around, especially in confined spaces like small homes or along narrow pathways.

Finally, they just don’t look safe, do they?

Retail businesses staffed by disabled workers

I got into a lengthy Twitter discussion this week about a “feel good” news story focused on an ice cream shop in Texas where most of the employees have developmental disabilities. Are these kinds of retail businesses designed to employ disabled people a big improvement over sheltered workshops? Are the owners praiseworthy innovators in the field of disability employment?

The only fair answer is “maybe” and “sometimes.”

It is of course possible for someone to start a business with the deliberate aim of providing paid jobs to disabled people in a public, mainstream environment that’s essentially the same as other retail businesses … and for the right reasons. If they pay Minimum Wage or above, don’t claim the legal right to pay less, provide avenues for advancement, include non-disabled workers in the mix, and include at least some disabled people in ownership or management, it could be a good thing.

But these crucial factors are rarely addressed in the inspiring “human interest stories” done about them, the ones that usually come at the end of a nightly news program to make you feel good. Journalists especially should look much more critically at how disability-related employment ideas actually work, and what the owners are really doing. Do they participate in media stories in order to promote general improvement in hiring disabled people in all workplaces? Or, are they taking a bow for being a humanitarian? Does the story focus on the actual disabled workers and how they feel about their jobs? Or, is it all about grateful parents and community leaders heaping praise on a charitable enterprise?

And what are we to think when the owner says something like this, from the article linked above?

“It amazes me … how hard it is to get good help, especially in an economy like this where you’re paying $10 an hour for busboys and they’re not sticking around,” says Landis. “The answer to me is the special needs population.”

This should be a big red flag for possible exploitation, intentional or not.

Are the disabled workers paid less than $10 an hour because their disabilities and prejudice in the job market make it impossible to find a better paying job?

Do disabled employees “stick around” because they feel they have no other options, and everyone in their lives tells them they should be grateful for having a job at all?

How do we draw a distinction between touting the quality and reliability of individual disabled workers, and “selling” disabled people as cheap, easy to handle employees … who won’t quit no matter what?

Any of these “innovations” can be valuable to some disabled people, in some very individual and very specific situations. The problem comes when they are offered as a panacea for deeper problems that society just doesn’t wish to deal with … problems like accessibility of the infrastructure, ableism and racism, and the balance between business profitability, fair labor practices, and a living wage.

Disability Thought Of The Week: Sub-Minimum Wage Argument

con of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

Here’s an argument on the issue of sub-minimum wage I don’t think I’ve heard …

The original rationale for legal payment of “sub-minimum” wages to certain disabled workers was that a subset of “severely” disabled people are not capable of doing work that would ordinarily be valuable enough to justify regular wages. That’s one of the most frequent arguments you hear in defense of the practice to this day.

But business DO pay market prices, (give or take), for what these workers produce in sheltered workshops and similar disabled-only enterprises. So if their collective product is good enough to sell, doesn’t that justify paying all the disabled workers who contributed to making the product or service at least Minimum Wage?

Obviously, this assumes a kind of collective earning of wages that isn’t the way we do things in the US, or in most modern economies. We pay each individual based on their individual jobs and quality of work, (in theory if not always perfectly in practice), not on how well the business as a whole performs. But then we’re already doing something different with a class of disabled people … paying them less than Minimum Wage. Why not address their supposed impairments by paying each person a proper wage for whatever work they contribute to a saleable product?

I should also note that this argument only works for people who really do want the best for disabled people, but lack the language or imagination to envision anything better than sub-minimum wage and sheltered workshops. People who positively like, support, and profit from these models because they make cheap labor legal ... are beyond persuasion.

Thinking Today: Disability, Working, and Risk

Multicolored word cloud around words "Employment" and "Disability"

I read this tweet from the UK yesterday:

Poverty is hard, time consuming work, and being poor does not make one more attractive to employers. Employers usually prefer to hire people with stable, secure personal lives, including stable finances. Hiring a poor person or someone teetering on the edge of poverty is risky for employers, even before taking disability into account.

For most disabled people themselves, work itself is risky. There are tremendous benefits to be had from work, both emotional and material, but it's risky. You risk failure. You risk upsetting the balance of your health, either physical, or emotional, or both. Even if you plan and calculate meticulously, you risk finding yourself worse off financially than before you tried to work. You risk finding out there really are hard limits on what you can do with the body and mind that you have. You risk confusing people about whether you are, in fact, “disabled” and what that actually means.

That's another reason disability-related benefits like Social Security Disability and SSI shouldn't be viewed as something people get because they can't work, but rather as a secure base on which to build or rebuild a life of work. Benefits should back up your effort to work, not disappear as soon as you achieve stable, satisfying employment.

This should all be common sense. It’s not though, and that’s one of the persistent barriers to employment for people with disabilities. It also complicates most efforts to “reform” disability-related benefits.

Notes On Employment

Lego figurine with yellow skin wearing a black suit and tie, sitting in a black Lego wheelchair

I got preachy with someone on Twitter yesterday over how disabled people *should* approach the question of employment, and particularly how to handle the flawed programs that are supposed to help us find jobs and get careers off the ground.

I didn't mean be patronizing with that particular Twitter user, who was really just trying to express her anxieties about getting into an employment program. I think I was really venting my long-term frustrations about how vocational rehabilitation and other employment programs work and communicate with their customers. Over the years, I have talked with so many disabled people who deal with employment services in unhealthy ways … suffused with fear, anger, timidity, duress, and a sense of failure even before starting. While we all probably have some personal work to do to adjust our attitudes, I mainly blame the service providers, who mean well, but don’t seem to get how complicated employment is for disabled people. There’s so much more to the equation than just job skills and motivation alone.

So I figure now might be a good time for another “brain dump,” this time on how I see the massive, perplexing issue of employment and people with disabilities. I’m not a rehabilitation counselor. I’m not an expert on employment. Employment wasn’t even my main area when I worked in Independent Living. But I’ve seen and heard a lot of things, and I believe a big part of the problem is that our efforts to address the huge employment gap for disabled people are incredibly complex, yet we rarely sit down and try to sort it all out. Instead, everyone just forges ahead, assuming that their view of the problem is THE view of the problem.

Here’s what I’ve got … for what it’s worth:

Different strategies for increasing disability employment seem to operate in isolation:

- Make disabled people more employable, which presumes that the main deficits are in the disabled people themselves … poor education, lack of job skills and work experience, underdeveloped social skills, and yes, actual disabilities that make everyday work harder.

- Make employers more accommodating and less discriminatory, which presumes that most of the disabled applicants are fine, and are mainly held back by employers’ ableism, their unexamined assumptions about the imagined risk of hiring disabled people.

- Change the incentives so as to encourage employment, which presumes that the problem is mainly structural, not personal. Employers might be willing, and disabled people might be ready, but various benefits and support systems unintentionally hold people back because the systems are poorly designed.

There also seem to be four distinct groups of unemployed disabled people:

- Fully qualified to work, with the proper training and credentials, but can't get hired or keep losing jobs.

- Under-qualified and lacking workplace skills & habits, often among people who have had disabilities all of their lives and didn’t start being prepared for work until much later in life when expectations finally began to change.

- Have certain disabilities that really do make traditional work extremely hard to find and very taxing, even with support and accommodations. This may include people with chronic illnesses, disabilities that can change radically over months and years, and people with mental illnesses that wax and wane.

- Available work is not secure or lucrative enough to justify risking loss of benefits and support services, which goes back to the disincentives problem. These disabled people want to work, at least to some extent, but it just doesn’t seem to make sense financially and practically for them to dive fully into full-time work or long-term careers.

Discrimination really is a factor for all disabled people looking for work … discrimination that boils down to two big factors:

- On the whole, for any given position, employers would rather hire someone who isn't disabled.

- Employers would rather have "low maintenance" workers than deal with workers who might need accommodations, or for sure will need accommodations.

Aside from being unjust and illegal under Title I of the Americans with Disabilities Act, the problem with both of these factors is that the negatives are generally very exaggerated. Objective evidence suggests that in general, disabled people are good workers who are less hard to work with than most employers imagine them to be.

Not for nothing, but non-disabled workers have a host of other problems that give employers headaches … problems like absenteeism, poor work habits, and garden-variety toxic personalities. In comparison, disability is often less of a problem for employers than other problems that aren't related to disability.

Hovering over all of this are factors we pretty much all know in the abstract, but that are hard to dismantle:

- Many disabled people presumed to be unable to work actually can.

- Many disabled people make rational decisions not to work, or to work less.

- Disability alone rarely is the only factor determining whether a person can work. Some unemployed disabled people also have poor education, the wrong job skills for the market, and chaotic personal lives that make it hard to be reliable, much less top-notch employees employers really want to hire.

Possible answers:

Make it easier to pursue employment without shaming or punishing those who don't work. Don’t manipulate benefits and support systems to try and force more disabled people into work, reform them to make it an easier, clearer choice.

Stop assuming certain disabilities make it impossible to work, or that other disabilities are no impediment to working. Step back from old formulations about certain disabled people being ready for work, and others not, just by virtue of what kind of disabilities they have or how “severe” they are perceived to be. It’s entirely possible that your average quadriplegic is more ready for work than a person with chronic pain.

We should expand the definition of what we call "work," and of what kind of work can earn a disabled person money. If a bunch of currently unemployed disabled people were able to work part time while still collecting all of their benefits, the situation overall would be much better for everyone.

Everyone needs to acknowledge that different people have different problems. Some are mainly held back by discrimination, while others really aren't qualified, yet. No one formulas explains why any given disabled person isn’t working at the moment, which is also another reason we shouldn’t judge them, or for that matter not judge them for not working.

Some of us do need to do work on ourselves, but not everyone. And sometimes the perfect applicant still won't be hired because of discriminatory perceptions. Some people need job training. Some need to work on their people skills. Some need help outwitting, circumventing, and confronting discrimination.

Two closing thoughts:

1. The person I got preachy with on Twitter yesterday said that disabled people in our society are judged based on whether or not they work. She's right. There really is a philosophical problem with how we deal with disability and the moral dimensions of work, productivity, and worth. This is not only morally wrong, but I also don't think banging on about the work ethic and shaming people for needing benefits helps disabled people find work one iota.

2. If we could take economic necessity out of the equation, through iron-clad benefits and no income or asset caps, would more disabled people work for pay, or fewer? I think it's an experiment worth trying. So, you know ...


Digging Into The Employment Gap

Picture of a 3-d bar graph, being viewed through a magnifying glass
How much worse is unemployment for people with disabilities, compared with non-disabled people? While working on the Disability.TV Podcast episode on disability in Seinfeld, I came across a couple of bits where the comedy depends on the idea that disabled people have all sorts of perks and advantages in the workplace.

I get what that’s referring to. People with disabilities do have some specified legal rights in employment that non-disabled people don’t have, and "hiring the disabled" is widely understood to be a good thing to do. I also know that these advantages don’t amount to much, and that disabled people are in fact massively disadvantaged in the job market, at least if employment rates are any indication.

The U.S. Bureau of Labor Statistics now reports monthly on employment of people with disabilities nation-wide. Here is the June, 2015 report:
Reduced-size picture of US Bureau of Labor Statistics June 2015 report, accessible in full through link above
I circled eight items, each of them a percentage, because I think they are the easiest to understand and most meaningful measurements and comparisons. For one thing, they include only "working-age people" … age 16-64. They also take in two other relevant comparisons: Disable vs. Non-Disabled and Male vs. Female.

Finally, the report highlights two main ways of measuring employment itself: Participation Rate and Unemployment Rate.

The Participation Rate is the percentage of the given population that is either working or looking for work. It doesn’t count retired people or people who are unemployed not actively looking for a job.

The Unemployment Rate is the percent of people in the Participation Rate measure who are not employed. That is, it’s the percentage of people actively looking for work who haven’t found it. Put another way it’s the gap between how many people want and intend to work, and the number who are actually working.

With all of that said, here are some tentative, non-expert conclusions:

- The Participation Rates for disabled men and women are a lot lower than for men and women without disabilities. A far higher percentage of disabled people are neither working nor looking for work than the percent of non-disabled people. 28-34 percent of disabled are working or looking for jobs, while 70-83 percent of non-disabled people are working or looking for jobs. There are probably many reasons for this difference, including self-perception, societal expectations, work disincentives, and the immediate barriers imposed by peoples’ actual disabilities.

- The Unemployment Rate for disabled people is also quite a bit higher than for non-disabled people ... 11 to almost 9 percent for disabled, and only a little over 5 percent for non-disabled people.

- This means that, controlling for people not participating at all in the job market … leaving out people who consider themselves “too disabled” to work … we are still left with a large employment gap. If we go further, and note that there would probably be a lot more disabled people looking for jobs if they felt any hope of finding one that would hire them, then the gap would be much, much higher.

- It is worth noting that the Participation Rate has been growing and the Unemployment Rate dropping for disabled people over the last several months. But we’re talking about improvements in tenths of a percent, nothing to indicate a revolution or some massively successful new policy or approach, at least not yet.

Overall it’s hard to find bright spots or some hidden advantage of being disabled, when only about a quarter of working age disabled people are working, while over three quarters of working age non-disabled people are employed. The numbers certainly suggest that George Constanza faking a disability to get a job is not just funny, it’s nonsense.


Throwback Thursday

Illustration of the time machine from the film "Time Machine"
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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Some Thoughts On Employment

Penny Gould, Research On Disability / UNH - February 6, 2015

Comparing the employment data in the infographic above to a similar report from last September, it does look like more disabled people are getting into the job market  some actually getting jobs, others actively and intentionally looking for them. That’s good news.

I guess Im part of the trend. After a year and a few months without paid work, I got a part-time job tutoring students in writing at a local community college. Right now its the perfect job for me, given my health and the state of my disability. You could say I am under-employed, but I am participating in the labor market and satisfied with my current situation.

Of course the big picture is that by every measure, employment for disabled people has been extremely very low for decades … probably for as long as anyone has bothered to collect statistics. What could possibly change those numbers dramatically? What could we do to bring “employment” and “labor-market participation” for people with disabilities up to, say, 50% or higher?

I used to think that the gold standard for disability employment was the traditional, 9-5, full-time job, in an office. I thought anything less, or anything less traditional, was a defeat or a cop-out. I still feel that way about sheltered workshops, enclaves (where all-disabled work crews go somewhere to do a job, basically in isolation), and businesses set up specifically to employ disabled people. In some cases, it feels like an important principle to stick to. In others, well, maybe its just a prejudice for me.

The thing is, Im starting to think that the key to really moving the needle on employment for disabled people is to be open to a wider variety of work models. Part-time. Flexible schedules. Consulting. Working from home. Freelancing. Jobs crafted to fit a particular person’s abilities and talents. Seasonal employment. These kinds of models, coupled with firmer income support programs to fill in the gaps and self-adjust with the ups and downs of erratic employment, could make a real difference.

Which is not to say that anyone should assume that any of us has to work in some non-traditional setup, just because we have a disability. Plenty of us, maybe most of us, are fully capable of doing traditional full-time jobs The viability of lesser options should never be an excuse for relegating any of us to them if we want more. Also, non-traditional models need good policy development and vigilance, to make sure they dont end up being exploitive.

Its been a long time since I talked at length with a Vocational Rehabilitation Counselor. I wonder what they are thinking these days?


ABLE Act Wonkery

Green 3-D dollar sign
Ann Carrns, New York Times - January 30, 2015

This is an unusually complete explanation of the new ABLE Act. Although it is written entirely from a money / personal finance perspective, itone of the few articles I have seen that gives anything close to equal weight to the idea of disabled individuals opening and using their own accounts for earnings.

Most stories about the ABLE Act focused almost exclusively on families setting aside money to “take care of” disabled loved ones. That’s certainly one of the intended uses of the law, but its one that assumes a more passive role for the disabled person. In fact, the ABLE Act should be very helpful to disabled people who have the opportunity to work and earn.

Of course, it is worth repeating and lamenting that all of this is only available to people disabled before age 26 … a somewhat last-minute restriction cuts out thousands of disabled people who could have benefitted.

Still, if this thing works out well, it could be expanded down the road.


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

The word "Advocacy" being highlighted by a green highlighter pen
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.

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

The word Advocacy being marked by a green highlighter pen
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.