Why The Disability Community Needs To Vote on November 6th

It’s just a couple of weeks since I said I was more or less quitting blogging, but I feel compelled to write a blog post about the upcoming U.S. Midterm Elections. In the work I do with #CripTheVote, I try to be balanced and “nonpartisan,” but this time I’m going to go ahead and say what I think needs to happen in the 2018 Midterms, and why it’s especially important for the disability community.

At minimum, we need to flip at least one house of Congress to Democratic control. I personally would prefer both the House and Senate, but we need to flip at least one. If you generally vote for Democrats, as I do, this is obvious. If you usually vote for Republicans, you may think I'm being excessively partisan. But hear me out. There are four big reasons why people with disabilities, in particular, need to make this happen this year, and vote in noticeable numbers while doing it.

1. To act as a check on President Trump

Despite endless debate over President Trump's exact political significance, he is, if nothing else, a wild card. Nobody really knows for sure what he will do. So it is clearly a mistake to think he would never actually do anything to hurt "your" people, however you define that. And nothing in Trump’s history or rhetoric indicates that he has any special sympathy or interest in people with disabilities.

On the contrary, President Trump is notable for how openly he evaluates people based on how conventionally attractive they are, and whether or not they are “normal” in his view. He clearly despises anyone he regards as weak or alien in any way. Many of us disabled people feel should comparatively accepted by our families and communities. However, all of us who have disabilities also know that in fundamental ways we are still easily singled out as needy, abnormal, and unfamiliar. These are not qualities that President Trump is ever likely to embrace. If it ever looks to him like scapegoating people with disabilities would help him, it’s hard to imagine him hesitating to do it. It’s already happened in the United Kingdom, which is just barely emerging now from a period of years when both public sentiment and public policy directly targeted disabled people as unworthy financial drains on society. A strong opposition in Congress would at least help prevent a characteristic Trump tirade or delusion about disabled people from becoming actual public policy.

(Note … His administration is already targeting disabled immigrants very specifically, by proposing to ban aspiring immigrants and asylum seekers if they are deemed likely to be a “public charge” … that is, if they may need human services, due to, among other things, disabilities. It’s cruel on its own, and think of the precedent it sets even for disabled citizens.)

2. To act as a check on primarily Republican plans that would hurt disabled people

These include:

- Allowing health insurance companies to once again refuse coverage or charge more for “pre-existing conditions.”

- Limiting or cutting Medicaid, or narrowing Medicaid eligibility

- Cutting Social Security Disability, or narrowing eligibility

- Weakening the Americans with Disabilities Act

All of these steps can be prevented if just a single house of Congress switches to Democratic control for at least the next four years. There are no guarantees, but the likelihood of any of these things happening in the near term go way down if just one house of Congress is controlled by Democrats.

3. We need to demonstrate the growing power and political relevance of the "disability vote," so politicians of all parties and beliefs will feel they have to take disability issues and disabled voters seriously.

This is should be important to you whether you are a Democrat or a Republican. At some point, sooner or later, Democrats will be in a position to make major policy again. Nevertheless, it is a mistake to assume that Democrats will get disability policy right all on their own, instinctively. It really isn’t enough to for the disability community to help bring about a “Blue Wave” on November 6th. Democrats, too, need to recognize people with disabilities and their families as a factor in their future vision, policies, and tactics, and we will still have to be vigilant and hold elected officials accountable, no matter who is in Congress, the Supreme Court, or The White House.

4. We need to vote for state and local officials who actually make and implement most of the everyday decisions that affect disabled people's lives. And we need to be noticed as we do it so even state, city, county, and town officials will take our needs into account.

- Town and city councils decide on accessibility and good repair of streets and sidewalks, and in colder climates, what is and isn't done to clear snow and ice from pedestrian areas.

- County legislatures set the tone and budgetary parameters for how social and human services are delivered, including those for people with disabilities and their families.

- States have a lot of control over the scope and eligibility of Medicaid, including programs that provide long-term care and supports for disabled people.

You don’t have to be “into politics” or commit to full-time disability activism to recognize that elections do matter for people with disabilities and their families. And this year there are specific stakes and reasons for all of us to vote, and do so consciously and thoughtfully as disability voters.

Here are some online resources on voting … some general, some specific to concerns of the disability community:

1. Online Voter Registration - Vote.org

2. Find Your Polling Place - National Association of Secretaries of State

3. Polling Site Accessibility Checklist - U.S. Department of Justice, Civil Rights Division

4. Find Out What Is On Your Ballot - Ballotready

5. Voting Rights Subcommittee - National Council on Independent Living

6. Disability Issues Guide - American Association of People with Disabilities

7. Disability Issues Surveys, 2016 & 2018 - #CripTheVote

8. Voting Resources - Autistic Self Advocacy Network

9. Plain Language 2018 Voter Guide - Bazelon Center for Mental Health Law

10. Information On All Public Offices and Elections - Ballotpedia

11. Election Polling and Forecasts - FiveThirtyEight.com

12, The 2018 Midterm Elections, explained - Vox.com

Disability Thought Of The Week: The Straw Thing

I have a confession. When I first heard about the movement to ban plastic straws, and the anger of disabled people about it, I thought the whole thing was overblown. Although I have disabilities, I have only once or twice in my life needed to use a straw to get a drink. And that lack of immediate experience I think contributed to my initial belief that while it was a valid conflict and straws shouldn’t be so quickly and thoroughly banned, there was far too much anger about it on both sides.. In a way, I think there still is, because the thing should be easily resolved.

- The straw ban people should probably shift into a public persuasion campaign encouraging people who don’t need straws to request no straws when they order drinks at bars and restaurants.

- The disability community should probably accept something like that as a win, and maybe stop claiming, as a few of us have, that the straw ban is happening because non-disabled people hate disabled people.

Note: My own interpretation is that straw bans are happening because of the usual obliviousness and neglect of disabled people and disability concerns that occurs when non-disabled people get all excited about a brilliant plan ... whether it's a social justice movement, a conference, or a building. Indifference like this may seem to activists like a weaker, less motivating explanation than hatred, but not to me. Indifference towards disabled people is terrifying, and enormously harmful.

If we can secure the continued existence and availability of plastic straws for all who need them, then maybe we can also stop getting worked up over these small-bore personal environmental initiatives and organize instead around some serious push-back on the Trump Administration’s environmental policies.

Meanwhile, the disability community can use this as an example of why movements and initiatives that seem to have nothing to do with disability should always consider the possible disability angles on what they are doing, and get serious about consulting the disability community. That means more than just asking that one disabled guy you happen to know. It means reaching out to several different disability organizations that have the capacity to provide both personal and technical feedback. It also means that those organizations need to be ready to provide that kind of feedback on a moment’s notice, and mobilize in a reasonable but also forceful way to deal with things like the straw ban movement.

That would be great. And some of it might actually be how it turns out in this case, since it seems to me like the disability community is actually being heard on this, or at least having a voice, much faster and in more mainstream venues than I would have guessed just a few weeks ago. The problem is now being covered in “the press,” and not dismissively or as a curiosity.

The problem is that there’s almost nobody out there that I can see, other than a few disability bloggers, freelance writers, and tweeters, offering specific demands or compromise formulas to the environmental movement, municipalities, and companies like Starbucks. The only organized campaign I’m aware of is by Disabled In Action in New York City and the Brooklyn Center for Independence of the Disabled, which were planning to do a rally and press conference at a Starbucks store in the city today, but have at this point postponed because they are having possibly productive dialog with Starbucks management. I hope this bears some fruit.

For myself, I’m going to go to my local Starbucks this afternoon and talk to the manager there about the straw ban, and ask him to pass along to upper management the accessibility problem with banning plastic straws. I invite all my fellow “basic” disabled Starbucks goers to do the same.

Disability Thought Of The Week: Sub-Minimum Wage Argument

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.

Starting Somewhere

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Judy Heumann and her fellow activists begin the Section 504 sit-in, paving the way for the passage of the Americans with Disabilities Act. Watch full episodes of Drunk History now: http://www.cc.com/shows/drunk-history/full-episodes Drunk History airs Tuesdays at 10/9c on Comedy Central.

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Monthly Reading List

This is my first attempt at a monthly reading list. I plan on making it pretty much the same as the Weekly Reading Lists of the past, only monthly. First, a word about selection criteria ...

The five articles on each list won't be "the best" disability articles I've read, though I'm not likely to post items I think are bad. My selections will be based on a combination of quality, relevance for the month just passed, and content that happens to interest me.

Now, here's the list for June, 2017. All of them are about one topic ... the House and Senate health care bills, especially their implications for disabled people who rely on Medicaid.

Medicaid is My Lifeline
Erin Hawley, Easterseals Blog - June 13, 2017

Erin briefly and efficiently describes in detail how she uses Medicaid-funded home care, and links that to current proposals to cap and cut Medicaid.

Cerebral Palsy Didn’t Stop This College Junior. Obamacare Repeal Might
Jonathan Cohn, Huffington Post - June 17, 2017

This article caught me by surprise. It starts out as a fairly typical story of an inspirational disabled person, almost an inspiration porn story. Then it pivots to show how stories of disability success and virtue also depend on programs like Medicaid that require activism and political support.

Medicaid is a Disability Rights Issue
Erica Mones, Running with Crutches - June 19, 2017

Erica's blog post directly confronts conservative misconceptions about Medicaid ... especially the kinds of casual statements disabled people hear from friends and relatives who should know better, but don't.

Why Disability Rights Activists Stormed Mitch McConnell's Office
s.e. smith, Rolling Stone - June 23, 2017

s.e.'s Rolling Stone article connects all the important dots on this issue ... explaining the widely misunderstood links between disabled people, Medicaid, home care, and the struggle to stay out of institutions.

I'm a Republican and I depend on Medicaid
Jonathan Duvall, Pittsburgh Post-Gazette - June 24, 2017

I'm not going to suggest that the same arguments against Medicaid caps and cuts have more validity coming from a Republican, but they may carry a little more weight for conservatives, and with people who speculate that opposition to these proposals is partisan in some invalidating way. Also, I appreciate Jonathan making the point that far from being a ticket to idleness, Medicaid enables disabled people to work. In fact, it's usually a prerequisite to even attempting to work.

Undercooked Blog Posts on Disability and Health Insurance: Part 4

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I decided to hold off on the final post until after the House vote on the AHCA was resolved one way or another, or, you know, ANOTHER.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Part 3: Questions for Lawmakers - March 20, 2017

Post Four: A Positive Message, or What Do We Actually Want?

So, now that the American Health Care Act has been withdrawn ... this version of it anyway ... what kind of health insurance system would actually be good for disabled people? Put another way, if Hillary Clinton were President and there were slight Democratic majorities in Congress, what would the disability community be fighting for in health care?

I don't think we as a movement should spend too much time trying to decide which grand health care scheme we should endorse. Instead, let's focus on what disabled people, specifically, need from ANY health care system.

I would like to suggest three possible criteria:

1. No out of pocket price difference or service restrictions, regardless of disability.

2. Long term care at least as strong and community-based as found in the best state Medicaid programs.

3. Full eligibility for disabled people, regardless of employment status or income.

It may take years before we can once again really focus on disability health care policy we want, and in the meantime, we will probably have to keep playing defense. But just in case we are ever asked, "What do you really want then?" I think it's a good idea to remind ourselves what we are actually after.

What do you want to see in health care policy for disabled people?

Undercooked Blog Posts on Disability and Health Insurance: Part 3

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Post Three: 3 Questions for Lawmakers

All cynicism and partisanship aside, there are lawmakers who seem like decent people, but support cruel, nonsensical policies because they believe in AN IDEA. Right now, they are mostly Republicans, and they usually have more selfish motives for regressive tax-cutting and dismantling, rather than improving a moderately successful program like Obamacare. But most of them also say they are motivated by something like idealism ... for instance, belief in rewarding and incentivizing hard work, or giving people "a stake" in health care by making sure everyone has to pay something for it.

I would like to ask these members of Congress three questions about how their beliefs and ideals play out in the real world for disabled people:

1. Do you believe that when the government provides material support for poor people ... things like health insurance, disability, food stamps ... it is fundamentally bad for them?

2. Do you think that capping or cutting Medicaid will prompt significant numbers of disabled people to get jobs, and earn more money than they do now? Do you think that having to pay more for health insurance will make disabled people suddenly get healthier, and pursue cost-saving cures and therapies we previously ignored?

3. Do you believe it is better for people with significant disabilities if the government to pays for nursing home fees, rather than the cost of home care?

There is obviously some slant to these questions. The "right" and "wrong" answers are implied. At the same time, I think they are legitimate, honest questions Congress people should at least have to answer before they vote.

Undercooked Blog Posts on Disability and Health Insurance: Part 2

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting Saturday and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy

I worry a lot ... probably too much ... about overstating how awful and / or evil the Republicans' plans for health care are. Although I believe that more disabled people WILL DIE if the AHCA is passed, I don't believe that anyone of consequence actually wants that to happen ... apart from maybe the odd Twitter troll or Bannon acolytes who enjoy dispassionately discussing the benefits of having fewer disabled people to around to weaken our bloodline or whatever.

To me, the question of intent is almost beside the point. You can do a lot of damage to disabled people accidentally, and that's usually how we get hurt, both on the policy and personal levels.

I'm a small guy, 4 feet tall, and not super steady on my feet. Whenever I think of the danger to disabled people when hostile or indifferent politicians and activists get excited about big ideas and big changes, I think of myself trying not to get knocked over or trampled at a frat party. It's not that the revelers around me mean any harm. The problem is they don't notice I am there at all until it's too late. All they can do after backing into me is slur, "Oh, sorry little buddy ... didn't see you there!" and wander off. You see, they are busy doing other things, and they don't need to have it out for me to hurt me ... indifference is more than enough.

Politics is like that for disabled people, for the disability community. People have these other objectives and assumptions that may or may not be fine as far as they go, but they only rarely take the time to check and really see whether what they are doing will work for us, or whether their awesome ideas just don't apply to us.

By the way, this is somewhat of a nonpartisan phenomenon. I had to be careful in parties at my own fraternity in college, even though I felt comfortable with these people and they had a pretty good idea of my unique situation. The main reason I didn't support Bernie Sanders' Presidential run is that he never really took the time to convince the disability community that, for instance, "Medicare For All" would include the same or better home care and community services we get from Medicaid. I don't think for a moment that Sanders wants to institutionalize disabled people, but I'm still not sure he understands how that risk relates to health care proposals, even ones lots of disabled people would otherwise support.

At the moment, however, we are all living in a straightforwardly hostile frat, where angry, hyped up, brothers seem set on making the most of a newly won and unprecedented degree of freedom. They really do want to party like it's 1955, and we can easily get trampled in the process, because it seems like we simply do not exist in their vision of American Greatness.

Undercooked Blog Posts on Disability and Health Insurance: Part 1

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part One: 5 Basic Points

1. Most people don't really understand how health insurance works for disabled people. A lot of disabled people don't fully understand either.

2. Health insurance isn't something disabled people choose to buy "in case we get sick." It's something we have to have because we use it all the time, just to survive and function.

3. A subset of disabled people need what's broadly termed Long Term Care, which is everyday direct help to do basic self care, like getting out of bed, bathing, dressing, using the toilet, cooking and eating, etc. Pretty much the only health insurance that covers this over a disabled person's lifetime is Medicaid. Medicare doesn't cover it. Almost no employer-provided or individual market policies over it. Medicaid is the whole ballgame.

4. One way to control the cost of our care is to provide all the care possible in our own homes, rather than nursing homes and other institutions. Again, individual cases vary, but in general, supporting home care is cheaper and it's what most of us want anyway. But you have to be deliberate about doing this ... it won't just happen by lifting regulations and giving everyone theoretical "choices" with insufficient resources. And let's be clear, the savings from switching decisively to home care would be significant, but not revolutionary.

5. Individual cases vary, but overall, disabled people cost more to cover than pretty much everyone else ... sometimes a lot more. And there is almost nothing individual disabled people can do to mitigate this. Market flexibility, financial "skin in the game," and "personal responsibility" have little to no impact on our concrete needs. At best we can trim at the edges with assistive technologies and creative self-care techniques, but frankly, most of us have pushed the envelope on that already.

The point being ... there is really no untested way to save massive amounts of money on disabled people, other than to let us die or become permanent adult wards of overworked, under-resourced families. There is no super-obvious, low-hanging fruit of neglected solutions in this field ... aside from the fore mentioned shift away from nursing homes towards home care. Even that can only save so much. And there's currently basically nobody and nothing in the for-profit or even non-profit private sector that can meet the needs of disabled people without government funds.

There are no miracle cures for most disabilities, and their are no miraculous private-sector fixes to disability policy.

My Obamacare Story

The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:

I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.

Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.

When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.

In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.

At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.

The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.

Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.

Click here to tell your story.