As I have watched the Paralympics, the name Becca Meyers echoes between my ears. Thinking what would’ve been, could’ve been and should be has infuriated me since I read that Meyers dropped out because she was denied the right to have a personal care assistant. Reading about her experience resonated with me and likely so many others with disabilities — our care is often an afterthought or simplified rather than prioritized.
“The USOPC has denied a reasonable and essential accommodation for me, as a deaf-blind athlete, to be able to compete in Tokyo, telling me repeatedly that I do not need a Personal Care Assistant (PCA) ‘who I trust’ because there will be a single PCA on staff that is available to assist me and 33 other Paralympic athletes, nine of whom are also visually-impaired,” Meyers said in a statement posted to Instagram.
The “reasonable accommodation” is a story that disabled people experience more than many understand. It seems like the two-word phrase dictates the most critical aspects of our lives, with nondisabled people often deciding what is and isn’t “reasonable.” And it is the flaws in the phrase that represent the flaws in the system — it goes back to society viewing disability as a monolith and failing to recognize that disabled people have needs that are unique to them. Each one of our needs is essential, and nitpicking or analyzing what should be “reasonable” is flat out ableist.
And it’s the most intense and concrete example of how we, disabled people, are constantly told that we have unreasonable expectations and want too much from others or billion-dollar institutions or even the government. This is how the systems regarding disability-related accommodations have been established, though.
More often than not, it is bureaucracies or giants like the USOPC and universities, for example, deciding what’s reasonable. It becomes about those ultra-rich organizations finding reasons to determine the accommodations unreasonable. And in reality, they could come up with any reason to call an accommodation unreasonable and there’s little an individual can do about it, short of getting millions involved and media coverage, which typically doesn’t happen with disability rights movements.
“The USOPC has approved mS having a trusted PCA (my mom) at all international meets since 2017, but this time is different. With COVID, there are new safety measures and limits of non-essential staff in place, rightfully so, but a trusted PCA is essential for me to compete,” Myers said in the statement.
If the USOPC was really concerned about the number of people there, then don’t have it at all. I understand wanting to minimize the number of people there, but don’t deny disabled people — don’t deny Paralympians who have been training for years for this moment because of it.
I think there’s a consensus that PCAs for disabled people are not important and represent something “extra,” both in this situation and greater society. I experienced it throughout college, and institutions don’t want to pay people to care for others, even as they spend millions on nonliving structures. But I wish institutions and organizations like the USOPC would understand how essential having a PCA can be for some people. It’s the difference between independence and constantly waiting and for many, it’s the only path to true access and inclusion.
But who at the USOPC thought this would be acceptable? For one, the decision ignores the Paralympians’ right to have at least some say in who assists them. I don’t think those making the decisions would feel comfortable if they had to go to a foreign country and have a stranger follow them into the restroom because someone thought it wasn’t important for them to have a familiar face — because their comfort and needs weren’t “essential” enough.
And then the decision is simply disrespectful. It disregards the adulthood of the Paralympians — in line with how we, disabled people, are treated as children our whole lives. Some people, some athletes need assistance with daily tasks and simply need someone on standby every minute of every day, and it’s just not ideal or fair for the USOPC to deny athletes in that way.
There’s just an assumption that caring for disabled people — caring for us — is a familial duty and a labor of love. And our families must either accept the duty or put us in a group home. It’s a mindset used to avoid creating a substantiative care system for disabled people — even systems like Medicaid, praised by officials at universities and other institutions, don’t take into account the complexity of disability. Getting assistance through such programs often means sacrificing something else, whether income, employment or intelligence
Some may consider this a simple attempt to minimize the number of people congregating at the events, and though that’s part of it, it’s rooted in ableism. Failing to provide or allow each athlete their own personal assistant is either an unimaginable oversight from the USOPC or another example of a wealthy institution ignoring disabled people and our needs. Regardless, it’s disgusting.
I actually think it’s both. It goes back to society viewing disability as an all-or-nothing phenomenon, where disabled people cannot be extremely talented and someone who is talented cannot be disabled. This decision was USOPC saying, “if you are a Paralympian, then why and how would you need help getting dressed in the morning?”
It’s an example of how whenever I — or another disabled person — need support, we have to prove how disabled we are in order to convince others of our realities. We must give into ableism and talk about why we may be liabilities or unsafe by ourselves, almost to the point where we dehumanize ourselves. Forget about privacy. It’s about sharing our worst, lowest moments. But there’s a point where doing so and focusing on everything our disabilities prevent us from doing becomes the only way to get our points across.
I thought Meyers said it best in her Instagram statement:
“So, in 2021, why as a disabled person am I still fighting for my rights? I’m speaking up for future generations in hope that they never have to experience the pain I’ve been through,” Meyers said.
“Enough is enough.”