Disability is more visible than ever right now, and our most celebrated representatives — actors, athletes and advocates — are insisting on authentic portrayals, genuine athletic achievement and true political equity. What’s the end game? A respected place in the culture.

1. Think Beyond Disability
2. Make Medals Meaningful
3. #SayTheWordDisabled

1. Think Beyond Disability

Interview with Ali Stroker by Teal Sherer

Ali Stroker recently made history as the first wheelchair user to win a Tony Award. Before blazing that trail with her portrayal of Ado Annie in the revival of “Oklahoma!” she was the first wheeler to perform on Broadway in Deaf West’s “Spring Awakening.”

NEW MOBILITY: There is lot of weight to the Tony award. Not only did you receive the highest honor for your work, but your win was history-making. Seeing you on that stage, the disability community felt like they won too. Have you been able to take that all in?

Ali Stroker: Yes. It actually hit me harder after. In many ways, before, I didn’t even want to think about winning, because I didn’t want to get my hopes up. And then when I won and gave that speech … I forgot how many people watched it. The largest minority in the world are people with disabilities, so I think it really spoke to a lot of people. Disability is also just something that is never addressed at award shows, we don’t talk about it or see it on the red carpet or on the telecast. It was an important moment.

NM: You won for playing Ado Annie, a character that is not written to be disabled. And you’ve been cast in other roles that aren’t disability specific — Anna in “Spring Awakening,” Olive in “The 25th Annual Spelling Bee,” and earlier this year on an episode of “Charmed.” This is important. As performers with disabilities we have been advocating for consideration in roles that aren’t just disability-specific.

AS: I always feel like, in such a weird way, that I am more likely to get a role that is not specifically disabled. I think part of it is because it is so rare that I identify with those roles. I think a lot of the writing that is out there about disability, a lot of the time the story-line is based around the disability. It may be because I was injured so young. The disabled experience of course has been my entire life, but the story-line, the emphasis being on the disability, just doesn’t feel true to me.

NM: You were the first person in a wheelchair to graduate from New York University’s Tisch School of the Arts Drama Program. And more recently, The Ruderman Foundation partnered with Yale School of Drama to give an annual scholarship to a disabled actor. Having access to this kind of training is so important. What was your experience like at Tisch, and was there a learning curve in some of the classes because you were the first person in a wheelchair to study there?

AS: Yes, there was a learning curve. There was a lot of conversation about what was going to happen, and I felt a lot of fear on their end. They wanted to do it, their intentions were right, but there was a lot of fear because it was just something that they had never done before. So, it just took a lot of time for everyone to trust each other. I think in these educational settings it comes down to trust. And it goes both ways. The educators have to trust the student and the student has to trust the educators. Or someone. And for me, the first people I trusted were my peers because they were like, “We’ll help you do whatever you want to do.” So, I felt like I had back-up, which I really needed. And then I also learned really quickly that no one was going to do it for me. That I was going to have to translate everything. It turned out to be one of the best experiences of my life, but it was definitely challenging.

NM: What other barriers would you like to see broken?

AS: I hope that more people with different disabilities will be cast in roles that aren’t necessarily written for that specific disability. It’s what’s happened with every minority. First we have to be cast as the token whatever. And then we move into a place … and you know what, it comes right back down to trust. We trust that this group that is different is going to be able to appeal to audiences. Once we trust, we begin to see to the possibilities. I hope we see that there doesn’t have to be disabled content for us to see disabled actors.

NM: How do we break down that barrier?

AS: First and foremost, we need to become the best actors that we possibly can be. We need to be the best in the room. The other part of it is, we need to learn how to use our disabilities in our acting. To be successfully integrated, we have to have the ability to use our disability without needing to talk about it. Because that is also real life. We go out for dinner, and our disability is with us everywhere we go. The moment we wheel up to the table, the moment we transfer out of our chair, the moment we speak to the waiter or waitress. Is it about the disability? No. Is it present? Yes. That’s one of the gifts, that it’s always going to be present in a room, so we need to be the best at using it. What the director, what the producers, what the artistic directors come up with later on is great, but we have to be the smartest person in the room when it comes to our disability.

NM: So, we need to “own” our disabilities.

AS: Before owning it, I would even add “knowing” it, which is the most vulnerable part, because it is allowing yourself to look at where your limitations lie. But I think as artists it’s our responsibility. It’s also important that we learn how to collaborate as artists, to say this is what I bring, so if you think of a moment where we can use it, great.

NM: You are on the advisory board for the National Disability Theatre, which aims to employ only professionals with disabilities to create fully accessible, live, world-class theatre. And they recently announced a partnership with the La Jolla Playhouse in San Diego and Chicago’s Goodman Theatre to commission new works written by artists with disabilities.

AS: There needs to be a go-to place. There needs to be a hub for anyone who has questions, anyone who has a disability that wants to do theatre, to go see things. We need a place to look to set the bar. Because it feels like in the past there have been so many small organizations and task forces and everyone wanting to do the right thing, but it’s been all spread out. Now that NDT exists, I’m hoping and I’m really excited to see if we can pull all that energy together and what can we create.

Photo by Theo Wargo/Getty Images

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NM:
You’ve talked about accessibility — how even though theatres are accessible for patrons they are often not accessible for performers. Circle in the Square put in a stair-lift, ramps, and an accessible bathroom so you can perform in “Oklahoma!” And then “accessibility” was front and center at the Tony Awards when there was not a way for you to access the stage from the audience.

AS: We need access to do our jobs. If we rely on others and wait for it, we will never have the power to even begin to have the conversation of what the access will look like. The Tony Awards had a ramp at Radio City backstage for me, not because they didn’t want to have one from the audience but because there was no way to build a ramp in the front of the stage to code.

NM: You dedicated your award to the children watching who have a disability, challenge or limitation. And you met one of your fans, Henry, on the Today Show. His mom posted a YouTube video of him reacting to you winning the Tony, saying “That’s me!” You and so many others grew up not seeing yourselves represented, and it’s thrilling to know that kids with disabilities did see you up on that stage, and that they are seeing more representation in the media.

AS: I was doing an interview earlier today and we were talking about how beautiful it is to normalize something. For so long our culture and our society has been telling us there is something wrong with a person with a disability. So it’s great to be able to normalize it and show that people with disabilities can reach this level. All I’ve wanted is to be at the highest level of my field.

2. Make Medals Meaningful

Interview with Anne Hart by Seth McBride

Many adaptive sports were developed in a time when therapy and recreation were the primary goal. As disability culture progresses, society has slowly begun to realize that disabled performance can be a platform for true mastery. Classification — categorizing adaptive athletes based on their level of physical function — forms the foundation of Paralympic sport. And as the rewards for Paralympic success continue to grow, further encouraging authentic athletic excellence makes our performances, and our medals, more meaningful.

As an international wheelchair rugby classifier, Anne Hart determined each player’s impairment level to see where they fit in the sport. For the past 15 years, she has helped develop and refine the International Paralympic Committee’s athlete classification code and now serves as the chairperson of the IPC Classification Committee.

As an international wheelchair rugby classifier, Anne Hart determined each player’s impairment level to see where they fit in the sport. For the past 15 years, she has helped develop and refine the International Paralympic Committee’s athlete classification code and now serves as the chairperson of the IPC Classification Committee.

NEW MOBILITY: Why is classification so important in parasports?

Anne Hart: In Paralympic sport it’s very difficult to tell how much your performance is impacted by your impairment, and how much of that is maximized by your training, your skill, your coaching and being set up really well in your chair. So you do an impairment assessment of people and get an idea of what level of impairment they have. Then you watch them in their sport, and you have to watch not only what can they do, but how they are doing it. If an athlete is more impaired but really well trained, they shouldn’t be in a higher class. And if an athlete isn’t as impaired, but they aren’t very good, or they just don’t try very hard, they shouldn’t be in a lower class. We want to make sure that whoever wins a Paralympic event is, at that time, the best person, or the best team, and not somebody who has less impairment.

NM: Because classification can have a huge effect on who gets to the top of their sport, parasport athletes always gossip about it, usually related to who is mis-classed or sandbagging or hiding function. In the past, there was no downside to hiding function because if you got caught, you just wound up in your proper class. Can you see a world where people are punished for withholding function?

AH: There is now a procedure to address that. It’s called “intentional misrepresentation,” which means deliberately not showing your best or hiding skills or abilities relevant to the sport, or in a less technical description — cheating. It can apply to both athletes and support personnel. The penalty varies between sports, but it’s a bit like getting caught doping — it can range from being out of the sport for two years, to having a second occasion and being out for life. So it’s in place, but proving it is quite difficult. There have been a few cases where this has been proven and an athlete has not been allowed to compete in the sport for a set period of time, but until we have objective tests and measurements, it’s still based on expert judgement.

NM: How do you see classification changing in the coming years?

AH: There will be very objective measures that are done to determine impairment. We don’t have it for all impairments yet, but we will. Take wheelchair rugby where you have manual muscle testing. In athletes with strength impairment, that’s pretty objective — there’s not much variation between classifiers. But in other impairment types, such as limb loss or coordination, it’s still pretty subjective.

Isometric testing — where you’re on an electronic force plate doing sports-specific movements — has been shown to be very effective. Researchers involved with athletics and swimming have been working with this. You actually go to a laboratory and have standardized equipment and testing, and they assess your strength levels that way. There are a couple of ways you can do the tests to show when people aren’t trying their best.

There was this awesome study that was done a couple of years ago in Australia. They had hundreds of university students perform a strength test and they wanted them to try to cheat. The ability to detect when someone was cheating was quite clear. If you’re not trying to go full force, 100% effort, it produces a distinct pattern.

Also, the way we do observation assessment will change. Currently we do it pretty much with the naked eye. But now there are all of these video programs coaches use that let you slow things down and repeat them over and over. That would allow you to see exactly how someone does a movement and if they’re doing it in a way that’s not the first choice for their body, or if they’ve learned a way to do it using different muscles. Detailed observation analysis will help confirm we are getting people into the right class.

NM: All of the recent advances in functional recovery seem like they could pose problems with Paralympic classification. What if an athlete gets classified, and then they have a procedure or get a stimulator that increases their function? How do you keep classification current in a world where impairment may be less static than it is now?

AH: Stimulator use is already happening and is on the radar of those working in classification research. I know in a couple of sports there have been situations where athletes use it, as more of spasticity control. When they undergo assessment and evaluation they have to have it turned off, and they’re not supposed to have it turned on when they’re competing either. But monitoring this presents challenges. If you’re in the competition field of play, and nobody’s around, who is going to know whether it’s turned off or on? One of the ways that those devices are looked at now is what sport philosophers call “technological doping.” That’s going to have to be managed and dealt with.

The way the classification process has been done is, you go through classification a certain number of times and at some point your impairment is stable and you aren’t required to go through it anymore. Now, part of having the intentional misrepresentation policy in place is — if you’re going through treatments, surgical procedures or you’re using devices that have affected or made your impairment less, you have to disclose that and you have to be reassessed. If you don’t disclose that and it’s picked up on, you’re intentionally misrepresenting and you will have to face the consequences.

One of the things that has been discussed and trialed in wheelchair rugby is something I compare to having to undergo a random drug test: Classifiers will schedule an athlete who is no longer regularly evaluated for a new assessment at an upcoming event. Another thing that’s been trialed is having classifiers observe athletes whose classification doesn’t quite seem to fit. If there is sufficient evidence to suggest the athlete may not be in the correct class, the athlete is placed under review and has to undergo classification again. So, even if you have a confirmed or permanent status, your international sport federation could require you to come back to classification and reevaluate whether you still fit in that class.

Tatyana McFadden by Diarmuid Greene/Getty Images

Tatyana McFadden by Diarmuid Greene/Getty Images

3. #SayTheWordDisabled

by Lawrence Carter-Long

Lawrence Carter-Long is the director of communications for the Disability Rights Education and Defense Fund. He initiated the social media campaign “DISABLED #SayTheWord” in 2016 to celebrate, communicate and accelerate the big ideas of disability pride, identity and community.

Lawrence Carter-Long is the director of communications for the Disability Rights Education and Defense Fund. He initiated the social media campaign “DISABLED #SayTheWord” in 2016 to celebrate, communicate and accelerate the big ideas of disability pride, identity and community.

Once upon a time, disability was just a diagnosis. Thankfully, through the years, the word has evolved to encompass much more: community, identity, constituency, history and culture, to name a few. In 2019, anyone who thinks of disability solely as a medical issue is behind the times — by a few decades even. So why are we still debating the words used to describe disability?

Because language matters.

Historically speaking, fear of disability has been the default, and the language we use to communicate disability reflects that. Equating disability with diagnosis is not only a tough mindset to break, but given the limited lexicon we have to work with, it is also a difficult concept to define.

For this reason and others, euphemisms — words intended to put a more positive spin on the terms they replace — tend to complicate an already treacherous linguistic landscape. Feel-good phrases like “handicapable” or “differently-abled” don’t really challenge users to make changes to an inaccessible society because attempting to make everybody comfortable with the status quo is kind of the point. Which leaves us with a larger, more practical question: When discussing disability, do euphemisms actually work?

“We will only have real progress when we no longer search for polite words, but [when] … people with the label can use them with pride,” writes Rick Hodges in “The Rise and Fall of ‘Mentally Retarded,’” an essay in Medium. “The euphemism treadmill doesn’t solve the underlying problem; it only delays confronting it,” he explains. “As with a real treadmill, the euphemism treadmill gives the illusion of progress, but you don’t actually get anywhere.”

So how did we come to believe that a euphemism for disability was necessary to begin with?

Fault lies, perhaps, with the sadly misunderstood prefix “dis” itself. As commonly used in the English language, “dis” reverses or negates the meaning of whatever word we attach it to. Link “dis” to “ability” with this understanding, and the reasons why people resist the word quickly become obvious.

But the much-maligned prefix is broader, bolder and more robust than most give it credit for. In classical Latin, the primary meaning of the prefix “dis” translates to “two ways, in twain,” according to the Oxford English Dictionary. Quite literally, “in different directions, apart, or asunder.”

If we liberate “disabled” and “disability” from the stigma, negative stereotypes and the narrow concepts assigned to them, we also set the stage for new exciting, inclusive and creative interpretations. In language and in life, the occurrence of disability, not by intention but definitely by design, expands opportunities for discovery, discernment and disruption.

Or to put it another way, if being disillusioned can help deliver a person from deception, then the occurrence of disability can have a similarly liberating effect on human experience. If we let it.

“Disability pride is still a rare thing,” said Kathleen Bogart, assistant professor of psychology in the College of Liberal Arts at Oregon State University. “Most disabilities are invisible, and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination, but not identifying also perpetuates the stigma that disability is undesirable.”

Therein lies the curious Catch-22 of disability. If identifying as disabled is necessary to free oneself from stigma, but stigma keeps some people from identifying as disabled, then it should come as no surprise that much of society remains both confused and conflicted.

In a study published in 2017, Bogart and her team found that disability pride was more prevalent among people who had experienced stigma, those who have strong social support and people of color. They also found that the experience of facing stigma and eventually connecting with the larger disability community led to a greater sense of disability pride, and greater pride, in turn, boosted self-esteem.

Whereas previous generations of disabled people frequently found or created community by physically migrating to a specific place, increasingly the internet and humble hashtag have accomplished what geography can’t do alone.

“Social media is allowing disabled people to connect on issues that we may not have realized we weren’t the only ones concerned about,” says Vilissa Thompson, the writer and activist behind RampYourVoice.com. “It has been a megaforce in getting disabled voices that typically went under the radar into the mainstream and reshaping how society understands disability that goes beyond stereotypes and misconceptions.”

“Hashtags are a powerful tool in creating conversation and community,” wrote #CripTheVote co-founder, Alice Wong. “I knew that a hashtag could help us get things started and would invite people to participate rather than something coming from just us and suggested #CripTheVote as a riff on Rock the Vote. It’s been great seeing so many people using this tag in the last three years and the rich diversity of expertise and commentary on political participation and disability.”

Still, the work of Dr. Sara M. Acevedo, assistant professor of disability studies at Miami University of Ohio, reminds us that societies, cultures, and concepts emerge and evolve at different paces with sometimes conflicting goals. So, what to do when opinions and priorities diverge? The answer, it seems, is coexist. The persistent tension between proponents of “person-first” and “identity-first” language is one notable example.

Person-first language — I am a person with a disability — posits disability is anything but a defining characteristic in a person’s life, and in some cases, it makes disability almost incidental. By contrast, identity-first language — I am disabled — purposefully centers disability as a cultural and political influence. The preferences an individual adopts are heavily influenced by their surroundings, circumstances, opportunities and values. Different countries, languages, historical perspectives and economic realities add complications and tensions to differing views.

“When it comes to transnational experiences, any rush to judgment based on an arbitrary comparison between activism in the West and activism ‘there’ is not only historically and politically unsound, but also oppressive,” warns Acevedo. While seemingly benign phrasing like “differently-abled” or “challenged” is routinely criticized in the U.S., the concepts that propel preferred words and ideas are just taking shape abroad.

Given this reality, why do I encourage everyone to #SayTheWord disabled?

Because wherever we put the prefix, claiming disability connects us to each other, our common history, and to the lineage of all those who fought, protested and persisted so that one day we could be proud of it too.

Because if we don’t link the individual experience of disability to larger systems, contexts and cultures, we won’t stop discrimination, injustice, stigma or bigotry in society.

Because disability pride takes away a weapon — stigma — that those in power have tried, and will continue to try, to use against us.

And ultimately, because fairness, equity and responsibility shouldn’t be delayed or denied due to someone else’s shame.

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