People with Rare Diseases Need Better Social Support [Repost]

“There are more than 7,000 different rare disorders. Combined, 1 in 10 Americans has a rare disorder,

so the experience of rare is actually common.”

Although the experience of rare may be common, it can also be lonely to know few others who look, feel, or experience life like we do. Researchers at Oregon State University found that, for people with rare disorders, emotional support and social belonging are more important for happiness than tangible supports. They also found that the link between social support and happiness holds up regardless of how much stress people are feeling in their lives.

Read About The Study Here

Let’s Slow It Down

On Tuesday morning, I saw a post from one of my favorite parent bloggers, Jess from Diary of a Mom. The post really resonated with my emotional state at the time, and still this morning.

Jess writes about how hard it can be, in a state of anxiety, to be told things like “it’s going to be OK” or “don’t worry” because, sometimes, it’s not all OK and there are in fact things to worry about.

Instead Jess suggests saying, “Let’s slow it down.”

Of course, human anxiety is an extension of our primal stress response. As animals, we are wired to respond with an elevated heart rate, muscle tension, and other responses when confronting impending danger. When we respond to short-term threats by “speeding it up,” we tend to prevail.

But sometimes, as it has been this week for many Americans, the threat is in the waiting. We don’t know if, or when, a beast might emerge, or what it will look like. We might be torn between hoping for a desired outcome and fearing the worst outcome possible. We feel compelled to prepare ourselves, but don’t know how to do so.

Perhaps it would do us all some good to stop and acknowledge that this is indeed an unusual time, building on the unusual of the past eight months. It is OK not to be OK. We don’t need to keep rushing around trying to live our ordinary lives with an extra layer of political or existential stress piled on.

This weekend, let’s be sure to take care of ourselves, engaging the slower “rest and digest” self-care processes that can take a backseat during times of high stress. Let’s be sure to treat our bodies well, to engage our minds, and to tend to our important relationships. While we wait, let’s take some time to slow things down.

#CripTheVote! Making Our Voices Heard

Last week, my husband Jason and I went to our nearest early voting location. We arrived 20 minutes before the doors were scheduled to open, and found a line of people spanning the length of a full city block. Some folks had even set up chairs and must have been waiting a while. It was like nothing we had ever seen on an election day, much less two weeks prior.

The first time I ever voted, when I was 19, I used a brailled absentee ballot in Arizona. That was my favorite way to vote, but it hasn’t been available in any of the other states where I have lived. Subsequently, I have always gone to the polls to vote, usually early, and usually alone, to use the talking voting machine.

As I waited in line, I pondered how unusual this election season is, for so many reasons. But at the same time, I reflected on all the historic steps that have led up to my fulfilling my basic right to vote.

Just a hundred years ago, women in the United States were given the right to vote. Before that, my husband would have been expected to vote for both of us. And I would have been expected to …. Stay home and take care of a bunch of kids? Without reliable birth control, probably.

But then I remembered that I’m not just a woman, I am a blind woman, and during, say, the 1916 election, blind women didn’t have too many opportunities to integrate into society. I probably would have still gotten a basic education at the school for the blind, but after that? Would I have had opportunities to go to college, to marry, or to learn the skills needed to become a good housewife? It’s doubtful.

Several laws have been passed protecting the disabled citizen’s right to vote, beginning with Section 208 of the 1965 Voting Rights Act, which allows disabled voters to cast a ballot with human assistance. The Help America Vote Act (HAVA), passed just before I reached the age of majority, requires every polling location in the United States to have at least one electronic voting machine. Such machines have assistive technology enabling people who cannot read print, as well as people who cannot handwrite or use a punch card, to cast an independent, secret ballot.

As we reach the front of the voting line, a well-intended woman tells us that next time we can vote curbside. She points to a sign advertising curbside access for “handicapped and elderly” voters. It’s intended for people who can use paper ballots but who cannot stand in the long lines due to physical disability or health risks. I calmly inform the woman that curbside voting wouldn’t really work for people like me, who need to use the talking machines inside the voting booth. It’s a textbook example of disability spread, reminding me how much work still needs to be done.

We finally make it inside the government center. Jason completes the brief identification forms for both of us, so naturally, the poll workers think he will be helping me vote. I can feel the power in my voice as I tell them, projecting through my mask: “I’d like to use the talking voting machine, please.” I momentarily consider the number of letter-writing campaigns, call-ins and congressional meetings, drafts and amendments to legislation that happened before I reached voting age, enabling me to utter those words and have my request honored.

After a very brief discussion between poll workers, I am escorted to the machine and my ballot is loaded. I put on the headset and turn up the volume just in time to hear the name of my preferred presidential candidate being read. I press the button labeled with a braille S, for select, then arrow forward to the next contest. Within just a couple of minutes, I’m done with my electronic ballot. Jason and I insert our ballots into the box and head out, our civic duty completed.

A great deal of work has been done that enabled me to cast an independent, secret ballot last week. But much more work still needs to be done. There are disabled people who have been disenfranchised because they have been placed under guardianship. Others cannot vote because they lack government-issued identification cards. Absentee ballots are still inaccessible to people with print disabilities in many states, and many of these same individuals cannot access transportation to get to the polls. And, despite the HAVA, some polling locations are still inaccessible to wheelchair users. Removal of these barriers would greatly amplify the participation of disabled voters in our democratic process.

This election is indeed unlike any other. If you are able, please exercise your right to vote, and please join me in working toward a future where every one of our citizens can make their voices heard.

Down to the Struts, Episode 1: Getting Wise About Disability

Earlier this week, my friend Qudsiya Naqui interviewed me for a new podcast series called Down to the Struts. On this episode, Qudsiya and I talk about the history of the disability rights movement, including the ADA and what this landmark legislation left out; the experience of reconciling multiple minority identities; and the surprising innovations we all use every day that were originally created as disability accommodations. A transcript is included alongside the audio recording.

Listen and Read the Episode Here

Our Current Expertise Crisis

I’m in a Facebook group for people with my eye condition, Lebers Congenital Amaurosis or LCA. On Monday, someone posted in our group, noting that the reported incidence of LCA has increased in the last two decades. She wondered whether this was related to increased vaccine use. Astonished, I looked at her profile, and found several posts condemning “big pharma, CDC, WHO, and Bill Gates” for orchestrating the current COVID-19 lockdowns.

I’m not giving anti-vax ideologies any space on this blog. They not only endanger people’s lives, but they are deeply ableist in the implication that it’s better to risk a deadly disease than to develop a disability, be it autism, LCA, or anything else.

But this post is indicative of a more disturbing intellectual crisis. We are embroiled in a crisis of truth. In recent months, as real news has been declared fake, fake news becomes real. A fringe of individuals and groups are rejecting the validity of widely accepted public health expertise. We live in an age where anybody with a computer or smart phone can tout themselves as an expert. They can do a little online research, learn some popular medical jargon, get on social media and promote any number of conspiracy theories or quack treatments to their followers. These individuals are accepted and believed by followers who have lost faith in the traditional expertise system. And perhaps the most vulnerable victims of all are disabled people and our caregivers, people who have been let down by the established experts for centuries.

Within the last century, science and research were used to justify the superiority of one race over another, and eugenics against racial minorities, disabled people, and other groups. There was a time, not too long ago, when the mainstream guidance was to put disabled children into segregated schools and institutions away from their families. More recently, in the age of mainstreaming, people with titles and degrees still advocate normalization as a key part of educating disabled kids. I’ve lost count of how many times I’ve heard a parent say that “We trusted the experts with our disabled child, and now our child is suffering.” Certified educators are requiring many disabled children to struggle to read print with very little usable vision, to speak words they cannot hear, or to suffer through long Applied Behavior Analysis (ABA) regimens designed to hide their autistic traits, for instance.

For far too long, nondisabled experts have used science to justify harmful, ableist practices affecting our lives. Consequently, disillusioned parents may be taken in by the promises of self-proclaimed experts professing to know what caused their child’s disability or how to cure it. Further, many disabled activists have become wary of the natural and social sciences. In recent months, the number of science skeptics is growing at an alarming rate.

Sure, scientific studies can lead to flawed conclusions. Consensual “best practices” can be flawed as well. But that’s a consequence of the human beings running the studies, and their biases, rather than the science itself. Ironically, anti-vaxers often accuse vaccine researchers of conspiring with vaccine makers to fabricate results, but the father of the anti-vax movement, Andrew Wakefield, was himself found to have engaged in blatant fraud.

I’ve heard people criticize scientific bodies, like the CDC, under the logic that because recommendations are constantly changing, we shouldn’t take them too seriously. But this continual change and adjustment is part of the scientific process. As new evidence is acquired and incorporated into older understanding, our models and theories continue moving closer to the objective truth

Disability-related expertise needs to change with the times, too. In my opinion the answer is not to reject bodies of expertise or to make anyone and everyone an expert. I believe we need to continue with the scientific process, but we need to involve disabled people in every level of that process. Science can be employed as a valuable tool to aggregate and quantify the lived experiences of millions of disabled people. We as disabled activists know what kinds of contemporary questions are worth asking. By partnering with scientists and policymakers, we have real potential to shape the future for disabled people around the world.