When we think of the word “disability,” we typically don’t imagine the enormous spectrum of the disabilities that impact people today. From hearing or vision impairments to chronic pain conditions to mental illness, the term “disability” covers a broad range of physical and mental conditions.
In fact, according to the Pew Research Center, there were 40 million Americans with a disability in 2015, or 12.6% of the civilian, non-institutionalized population (a discriminatory way of counting, as if those in institutions are invisible: when you start working on disability rights, you start to notice these sorts of things).
Here are a few things all folks should know:
Ableism is everywhere.
I mean, we have the ADA (the Americans with Disabilities Act) to protect us, right? It basically assures accessibility for persons with disabilities. Like parking spaces and ramps. But there’s a lot more to disability rights than the ADA (often at the risk of being gutted, by the way).
Remember that plastic straw ban? A lot of folks with disabilities need them to drink. It’s the only way they can consume liquid, especially hot liquid, without help. No, other things (i.e. metal and silicone straws) won’t work for various reasons. And think about how you scoff at the pre-cut produce in the grocery store. But if a person’s hands shake too hard, chopping up a melon may be impossible.
We’re slapped with ableism every day. Ableism is often directed at those of us with what are called “invisible disabilities:” disabilities you can’t see with the naked eye, and so which, in the eyes of the abled, tend not to count. Take someone with chronic, severe pain who’s always being ignored or told she just needs to get off her ass and work as an example.
People with disabilities may lack options.
As someone with bipolar II and ADHD severe enough to limit my ability to work full-time, I have a disability. So does Kate Mancuso, a neurodiverse person living in the Bay Area with a kind of hypermobility syndrome. As Mancuso explains in an interview with Scary Mommy, the biggest issue facing those with disabilities is affordable housing. There are a lot of reasons for this. According to the U.S. Census, “Adults aged 21 to 64 with disabilities had median monthly earnings of $1,961 compared with $2,724 for those with no disability.” That’s an enormous disparity. Many people with disabilities don’t live on supplemental income from the government, and for those who do, the checks are often meager.
Being stuck is a major part of having a disability. As Mancuso says, right now, everyone’s talking about where they would move if the U.S. totally goes to hell. Zhe (preferred pronoun) has the bankable skillset for immigration. But zhe also has disabilities that prevent immigration to another country.
But forget leaving the country; when you have a disability, leaving the state may be an issue. Medicaid has a “Money Follows the Person” (MFP) provision, which 43 states and DC now participate in, that allows people to transfer out of institutions and use homebound care instead. But transferring that money across state lines? Nightmarish. You may be stuck where you’re at.
People with disabilities often have trouble accessing fair work.
Workplace accessibility is also an issue. Surprised? Thought the ADA protected that? You were wrong. They may prevent some forms of discrimination, but they can’t prevent jobs from requiring a driver’s license where none is needed, for example. They can’t stop employers from denying ergonomic chairs people need, can’t make them provide the bare accessibility to get into a meeting, let alone get your voice heard, in some cases.
Then there are marriage issues.
Mancuso says that marriage discrimination, or the so-called marriage penalty, is also of major concern. According to the Social Security Administration, “When a person who is eligible for SSI benefits lives with a spouse who is not eligible for SSI benefits, we may count some of the spouse’s income in determining the SSI benefit.”
“I know people who have had weddings which are dedicated to protesting this. Like here is our handfasting, too bad we can’t get legally married,” says Mancuso.
Police brutality impacts those with disabilities.
Many disability advocates, Mancuso explains, look at police brutality and see an entanglement of police brutality, race, and disability issues. She cited the case of Kayla Moore, a transgender woman of color in the Bay Area. A paranoid schizophrenic, Moore died under restraint in police custody. In Georgia, Anthony Hill, a veteran, was shot by a police officer for “behaving erratically” in an apartment building complex in Chamblee, outside of Atlanta. Hill was naked, and reportedly had both bipolar disorder and PTSD. The officer shot within seconds of arriving on the scene. These issues point to the need for a police force trained in mental health intervention, Mancuso says. One statistic cited by the disability activist blog Rooted in Rights says that a third to half of all people killed by the police are disabled, while another cited a number of one-quarter.
People with disabilities are also disproportionately affected by sexual assault.
According to the report “Not on the Radar” released by the National Council on Disability, a full one third of female undergraduates with a disability were sexually assaulted on college campuses. According to Disability Justice, people with disabilities are sexually assaulted at three times the rate of other populations. 83% of women with a disability will be assaulted in their lives. Moreover, half of these crimes are never reported.
So who’s working to solve all this?
On top of all of this, Medicaid and the ADA are constantly at risk. Organizations like ADAPT, a national, grassroots disability advocacy organization, have tirelessly fought against these issues. In 2017, Mancuso explains, Congress tried to pass HR620, a bill that would have gutted the ADA by forcing people to basically become personal experts in accessibility in order to make claims and report violations. ADAPT fought that, and they fought the repeal of the ACA (Obamacare) in 2016. Their strategy, Mancuso explains, is often to occupy government offices until they are forcibly expelled. One prominent activist, Anita Cameron, is proud to have been arrested “124 times with ADAPT doing nonviolent civil disobedience after the style of Dr. Martin Luther King, Jr., and Mahatma Gandhi.”
All this has been happening. All this continues to happen. None of it will stop until abled people become aware of the struggles that people with disabilities face on a daily basis. Not the struggle to see. Not the struggle to move, to bathe themselves, to go out on the street without a panic attack. But the struggle to be noticed. The struggle to exist outside the margins. The struggle to be seen as full participants in the human experience, worthy of housing, worthy of healthcare, worthy of marriage. Worthy of police protection, worthy of freedom from assault. Worthy of a place at the table, deserving of a voice in the decision, for example, to ban plastic straws. No longer the butt of jokes. No longer subject to quack advice from clueless laypeople, to scorn of “buck up, it’s not that bad.”
The abled community needs to look up. They need to see our faces: not the just the faces of people they know, but the face of Americans with disabilities. They need to know the issues we face. And they need to demand justice.