Charlottesville

Within a couple of days of the shocking and violent march of neo-Nazis, anti-Semites, and white supremacists in Charlottesville, Virginia, many disability organizations issued statements about it. For example:

NCIL Statement on the White Supremacist Violence in Charlottesville

AAPD Statement Condemning the Violence and White Supremacy of the “Unite the Right” Rally

ADAPT’s statement condemning racist violence in Charlottesville, VA

We at NCCI share and echo these sentiments.

For these organizations, their members and supporters, condemning the events in Charlottesville in very blunt, specific terms was an obvious thing to do. However, it may not be obvious to every disabled person or disability activist why this is so.

Here, then, are three reasons why a disability organization would speak out on an event like what happened in Charlottesville:

1. Disability intersects with other identities, communities, and issues. Lots of disabled people are also Black, Jewish, LGBTQ, and/or other identities that were explicitly targeted by the hateful rhetoric and actions of the alt-right, neo-Nazi, and white supremacists who marched in Charlottesville. Even if disabled people weren't explicitly targeted as disabled people, members of our community certainly were. The disability community is uniquely diverse by definition, and we should all be ready to stick up for all of our brothers and sisters, even if some of us don't feel immediately, personally discriminated against or attacked.

2. Historically, far-right ideologies have NOT been friendly to people with disabilities. Actually, that is an understatement. To cite just one example, disabled people were systematically murdered by state doctors in Nazi Germany, specifically because of how disability was regarded in Nazi ideology. More broadly, ideology of any kind based on the superiority and dominance of one type of person over others almost never bodes well for disabled people, in any historical era. We don't have to have been explicitly named by the tiki-torch carrying racists in Charlottesville to feel legitimately threatened as people with disabilities.

3. Disabled people, and people who care about disability issues, aspire to be fully participating citizens who take full responsibility for what happens in our society. This is happening in our society. Those of us in the disability community also resolve to speak for ourselves, and not simply rely on the good will of others to "take care of us." Again, this means taking responsibility for addressing emerging threats, and not waiting for others to do it for us.

These facts are more than enough to justify and require us to speak out.

What Should We Call Ourselves?

One way to fight stigma and discrimination based on disability is to reject the label "disabled," and instead use another term that sounds nicer, less negative or limiting ... something like, "special needs," " differently-abled," or most commonly, "person with a disability."

This last approach is known as "person first language," because it emphasizes that above all, we are people, who just "happen to have" a disability. Disability, in this view, is a secondary thing, an add-on characteristic that we can separate from ourselves and look at objectively, as a purely practical matter that has nothing to do with who we are as people. Disability is a "thing" that you "have." It's not an identity that defines you.

For some of us, this way of thinking and talking about disability in our lives works well. It's still probably the most common way that disability thought and language are promoted to the general public. It is the most widely-accepted, "politically correct" term.

In recent years, however a growing number of people in the disability community have gone another way, embracing disability as an important and valued part of their identities. Instead of turning away from stigmatized words and asking others to look away from impairments, these people take them on squarely, affirmatively, saying, "I'm disabled," and talking about "disabled people." Some choose this because it sounds simpler and less fussy, but many also prefer placing "disability" or "disabled" up front, for specific reasons.

For one thing, carefully insisting on "person with" a disability is not only awkward in speech and writing, but can seem a little condescending, as if we need constant reassurance that we are, in fact, people. It also fails to recognize that whether we like it or not, disability is a cultural and social identity, not just a practical matter. The idea here is that we can try to pretend that disability doesn't really matter, in hopes that people will think better of us, but disability does matter. It doesn't matter in a bad way, necessarily, but it matters. Others argue that avoiding or demoting the word "disability" though person-first language and euphemisms like "handi-capable" actually keeps alive the idea that disability is always a bad thing, something to be tolerated and managed, but fundamentally a negative. By accepting "disabled," we can work to change what the word means and the feelings it brings out in others.

Which terminology should you use then?

Your best bet is to pick the terminology that makes the most sense to you, but be open to adjusting to the preferences of other people when you meet them, especially if they have disabilities themselves. Whichever construction or wording you prefer, the worst thing you can do is criticize or lecture to another disabled person / person with a disability and tell them that the terminology they use is wrong.

Language evolves, and so do our own views of disability ... maybe especially our own disabilities. Instead of worrying about getting it exactly right, keep an open mind, eyes, and ears, and appreciate how changes in language reflect ongoing changes in thinking. Shifting expectations can be annoying sometimes, but they are also healthy signs of the disability community's growth and diversity.

Disability, Healthcare, and Medicaid

The U.S. House of Representatives is set to vote Thursday on the American Health Care Act. The AHCA is proposed by Congressional Republicans and President Trump to "repeal and replace" the Affordable Care Act, also known as "Obamacare."

Aside from pure partisanship and dizzying figures, there are several broad angles from which to evaluate the AHCA:

Young vs old ...
Poor vs rich vs middle income ...
Employed vs unemployed ...
Government vs private sector ...
Costs vs compassion …

Hovering over all of this is a more basic question: Should quality health care be a human right, or is it something to be earned, a motivation for hard work and success?

Even less understood or discussed is what health care means for a specific population of Americans … people with disabilities. Here, then, are a few key points about how the disability community views the health care debate:

1. There is no sugarcoating the fact that as a group, people with disabilities cost more in health care than pretty much everyone else. And, there is little we can do individually to trim those costs. Healthy lifestyles help a little. Cures, therapies, and technologies occasionally produce a breakthrough or two. But by and large, disabilities aren't fixable in any significant, permanent way. Our needs are what they are.

2. Budgeting our needs with Medicaid per capita formulas or block grants, and reducing overall Medicaid funding by over $800 billion, would mean pitting people with disabilities against each other ... my needs against my neighbor's. It would also leave us all crossing our fingers every year, hoping for enough state revenues to keep us living and working in our own homes, and if not, being forced into nursing homes or family care if there is a budget shortfall or spike in demand.

3. Most long term programs for people with severe physical impairments, developmental disabilities, traumatic brain injury, or autism are paid for largely by Medicaid. It is the financial backbone of these critical long term care services, and there is no viable alternative should Medicaid be restructured, limited, or cut significantly. Market-based, for-profit models for these services simply don't exist, except for the most wealthy families.

4. Health insurance for people with disabilities isn't something we want "in case we get sick or injured." That’s already happened for us. Most of us use health insurance constantly, just to keep living and functioning. It is not partisan exaggeration to say that reducing or limiting coverage for people with disabilities would cause many of us to die. Those who didn’t would still see the delicate structures we have built for fulfilling, independent lives shattered.

5. Health insurance for people with disabilities isn't a reward for hard work and success. It is a prerequisite for these things. We can't work hard and earn money without first having health care. For many of us, this includes daily help from another person in order to simply get out of bed, go to the bathroom, and prepare for the day ... services that can only be paid for long term by Medicaid.

Choice, free markets, work ethics, and mandates have little meaning when applied to health care for people with disabilities. Our needs are pretty much set in stone, and they are either met or not, almost entirely determined by how health care policy is designed. We urge lawmakers and citizens everywhere to consider carefully how their beliefs and assumptions about health care apply differently to people with disabilities, and at the very least to vote with care and full awareness.

Election Day +1

Whether you are happy with the election's outcome or not, we as people with disabilities are going to need to pay even closer attention to our civil rights and the service structures we relay on. Big changes of ANY kind are always risky, especially for people with disabilities. Although the election is over, now is the time to learn more about disability issues. We can't let it all drop again until the next election.

Locally, we have a new Mayor in Plattsburgh, Colin Reed, and a new state Assembly Member, Billy Jones. We will need to get to know them, and help them to know the disability community better.

We will have to work twice as hard tomorrow as we did yesterday. But people with disabilities are strong. We have to be. We can do it.