The Trouble with National Disability Independence Day
What? I ran across this on the nationaltoday.com calendar of days and thought it was a joke … kind of like May the 4th being Star Wars Day. But, no. July 26th is the day that the Americans with Disabilities Act (ADA) was signed into law in 1990, and somebody decided to call it National Disability Independence Day.
So, 33 years ago, just what did I (as a person with a disability) gain my independence from?
According to the federal government, “The Americans with Disabilities Act (ADA) protects people with disabilities from discrimination. Disability rights are civil rights. From voting to parking, the ADA is a law that protects people with disabilities in many areas of public life.” [1]
On the ADA.gov website, the only four topics they discuss regarding the ADA are an introductory overview, service dogs, parking, and effective communication. They are missing a ton of things, but let’s just start with their basic premise.
Independence from discrimination.
Let’s see if that feels right in all aspects of my life. (I emphasize “my life” here because I realize that I have some inherent privilege as a straight white female living in the United States who has, until recently, been employed full time.)
I was employed without my disability taken into consideration, so that’s a protection the ADA granted me; and, when I needed accommodation from my employer I was able to receive it thanks to the ADA.
Parking areas, hotels, restaurants, and shopping venues still have barriers for people with mobility disabilities:
Handicapped parking access aisles are not parking spaces.
You call this an ADA hotel room?
Why are your retail displays so close together that I can't get through?
You mean I have to access your restaurant through the kitchen?
I could spend days on that, but won’t. Let’s talk about some others.
While public transit has been federally mandated to meet accessibility, as of 2022 only about 25% of New York City’s subway stations were fully accessible to mobility device users [2]. But a friend who lives in NYC said that the elevators aren’t reliable, which makes the situation even more tenuous. In Washington DC, it once took MegaBus over two hours to swap out the bus I was scheduled to take, along with other 60 passengers, for one with a working wheelchair lift. I was grateful nobody was angry with me for needing the lift. In other instances, I have been routinely required to go through multiple extra steps to schedule any accessible transportation, including booking at least 48 hours in advance. I’ve been stranded more than once, after 10pm, by taxi companies because their drivers of wheelchair accessible vehicles had gone off shift. It has been apparent that “24/7 service” means only for able-bodied passengers.
The airlines have been immune from the ADA because Congress passed the Air Carrier Access Act (ACAA) in 1986, and in March 1990 the Department of Transportation issued regulations to enforce it. The ACAA prohibited discrimination by airlines but despite the 15 updates in the last 36 years most aircraft still do not have wheelchair accessible lavatories. Stop a second and ponder that. I’ve been denied bathroom access on all but two flights in the last 36 years.
Let’s talk about physical comfort and safety. To date, no commercial aircraft are equipped to let me fly while seated on my power wheelchair. As such, I have been picked up and moved twice while getting onto the airplane and twice while getting off of the airplane--for every leg—and it’s one of the reasons I prefer to fly non-stop or with as few aircraft changes as possible. I will spare you the replay of physical damage that has been done to my body by people who handled me carelessly, whether intentional or not. But it has been extensive.
Then there’s my equipment. Regardless of whether I took my 25-pound folding manual wheelchair, or my 486-pound power wheelchair, they were always put into the cargo hold and treated as baggage. Airlines have only been required to report damage to wheelchairs since 2018. They are proud of the statistic that “only 1.5%” of wheelchairs are damaged annually. That might actually seem small until you connect that to the actual number of 28 wheelchairs per day that are being damaged and the 28 people per day that affects. Scarier is the annual math – 10,220 wheelchairs per year that are damaged. It can take months for the broken custom wheelchairs to be fixed. Using a loan wheelchair during the interim puts the traveler at risk for falls and pressure injuries which can lead to death. If you think I’m exaggerating, you might not know that Christopher Reeve died from complications of an infection caused by a pressure sore [2].
If 28 people per day left their homes able-bodied and arrived at their destinations with broken legs due to airline negligence, the headlines would result in shock, outrage, and an immediate cry to fix the situation. The ableism inherent in the system is that airlines, airline representatives, ground crew, and people employed to move wheelchairs through airports and get those who use wheelchairs on and off aircraft do not seem to understand the equivalence.
Leaving the world of travel, let’s move on to a more basic right guaranteed by the constitution.
Voting.
Recently at my local polling station I was required to log in using a computer’s touchscreen. My muscular dystrophy has progressed such that I can’t reach past my knees, so someone had to do the touching for me. It may seem small, but independence was not there. After signing in, I was handed an 11”x17” double-sided printed sheet and a pen. There was only one table that was low enough to pull my wheelchair under easily, and already in use. I live in a retirement community, where there were lots people who could have benefitted from low tables, but there was only one. I waited, as anyone who needed to sit instead of stand to fill out this sheet would have done. As I tried to settle in to vote I realized that my wheelchair didn’t fit between the legs of the table. When I did figure out how to get myself close enough to use the table, people going past could see over the carrel wall. The privacy of my ballot answers was denied to me. At the last federal election, the ADA station was set up so that the screen recording my answers was visible to anyone in the room. So, again, the privacy of my ballot answers (which I’m pretty sure it supposed to be federally protected) was denied to me because of my disability.
I have been denied privacy during medical care because my practitioner’s office wasn’t equipped with height-adjustable table that I could transfer onto. We had to figure out another way, but the solution involved two other persons in the medical office and was degrading.
In the last 15 years, none of my general practitioner physician’s offices, and only one of my neurologists offices, have had scales that would accommodate me on my wheelchair, so medication dosages were guessed based on my “looks like” and “last reported” weights. The inaccuracy of that put my health at risk.
Marriage equality is the next target.
As currently defined, the marriage equality act provides recognition and spousal protection for same-sex couples as have been afforded heterosexual couples for as long as marriage has been a legal institution. While inter-able couples or couples where both persons have disabilities are not strictly prohibited from marriage, the laws surrounding disability benefit create a discriminatory practice. Supplemental Security Income (SSI) is a Federal assistance program “that provides monthly payments to adults and children with a disability or blindness who have income and resources below specific financial limits.”[3] In order to receive Medicaid healthcare benefits, the person must be receiving SSI benefits. A single person with a disability is at risk for losing both their SSI and Medicare benefits because the SSI benefit calculation takes into account both their own earned income and their spouse’s “deemed income”. This has been discussed openly at the federal level for more than 20 years, recognizing the marriage penalty for SSI recipients. In a 2003 policy paper it was noted that, “The [social security] act also requires that if a man and a woman are found to be "holding out"—that is, presenting themselves to the community as husband and wife—they should be considered married for purposes of the SSI program. … Benefits for a married couple, both of whom receive SSI and have no other income, amount to 25 percent less than the total they would receive if they were living together but not as husband and wife.” The system is broken.
So, let me review how well I’m protected from discrimination. I can access some of the stores/restaurants/venues that I want some of the time. I can stay in some of the hotels that I want some of the time; and, am guaranteed that the bathroom will actually be usable at none of the aforementioned places. I am not guaranteed access to good health care by the physician of my choice at any of the time because they might not be able to accommodate my wheelchair, nor am I guaranteed the safety of me and my wheelchair any of the time when traveling.
At the bottom of the ADA.gov page there’s a link to file a complaint. I did that once. They agreed that my rights had been violated, but went on to say that they didn’t have the resources to follow up. So there are seemingly no repercussions for the business that violate the law.
How is this independence?
Please, let’s celebrate the signing of the ACAA in March 1986 and the ADA in July of 1990. They were a good start but until they are adequately enforced by the Department of Transportation and the Department of Justice, respectively, let’s stop kidding ourselves. “Disability Independence Day” is nothing but a fancy name to make people feel better.
[1] https://www.ada.gov
[2] https://www.nytimes.com/2022/06/22/nyregion/nyc-subway-accessibility-disabilities-elevators.html
[3] https://www.space.com/427-superman-christopher-reeve-dies-52.html
[5] https://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html