I’ve written extensively about living a version of Kafka’s Metamorphosis, waking up in a brand new body one day. Yet, I also woke up to a new world, a world that looks the same but is nothing like the world I used to live in.
I’ve spent most of my life as an able-bodied
individual who rarely considered the challenges of the disabled. 5 flights of
stairs? Easy. 4 mile hike to the top of a mountain? Done. One available parking
spot that’s a block away from where I want to go? No problem. It wasn’t that I
didn’t care or was uninterested. The concerns and challenges of the disabled
often weren’t part of my day to day life. As I’ve become increasingly more and
more disabled over the last few years, those challenges have become part of my
life and have given me a completely different perspective on the challenges of
those who have been disabled most or all of their lives.
The US passed the Americans with Disabilities Act in
1990, which protected the disabled from discrimination and required that public and private facilities be accessible. It was a transformative piece of legislation that
gave the disabled the same protections the Civil Rights Act of 1964 afforded to
populations that were historically marginalized. I also live in a state that is
considered one of the most accessible in the nation. I am fully aware that I
enjoy the fruits of many hard-fought battles to give the disabled this level of
accessibility. Yet, as with every law and especially civil rights laws, the battle doesn’t end after passage.
Leaving the house when you are disabled requires
careful planning, logistics, and execution, something I never had to worry
about when I was able-bodied. Going out almost always means I’ll need my
wheelchair now. Places my husband and I have been going to for much our lives
present complex challenges now. Before we go anywhere, especially some place
new, we have to consider whether there will be steps, will there be an
elevator, will my wheelchair fit in the space, how close can we park, what do
we do if all the handicapped spaces are taken, will there be a ramp? Although
businesses are required to conform to ADA standards, you will find that those
standards are not always met or are met haphazardly. An important question is
if the business doesn’t meet the ADA standards or is inaccessible despite
meeting standards, what do you do?
I read an article about a year ago about a local
woman who was suing multiple local, small businesses because they were not ADA
compliant. My first response was horror. The article did not paint her in a
positive light and I worried about the public image of the disabled and whether actions like this would threaten the profitability of small businesses.
Normative attitudes and media representations of the
disabled are fraught with ableism and ambivalence. A disabled person can be
held up as a one-dimensional source of inspiration for the able-bodied and then
in the same breath disparaged as a “leech” on society to justify drastic,
inhumane cuts to disability benefits and other social services. As with all
stereotypes, these images can be damaging and rarely reveal the entire picture
of what it means to live with a disability.
Disability advocates have worked to challenge these
images. Stella Young gave a TED Talk titled “I am Not Your Inspiration, Thank You Very Much” that
has over 1 million views on the TED website (click here for her talk). She gave
a humorous and enlightening challenge to this inspiration stereotype. Slate
recently posted an article deconstructing some of the commercials that aired
during the Super Bowl that also used this stereotype. We all love inspirational
stories, but the disabled are often used as a prop to remind the able-bodied “if
they can do it, you can do it.” The contrast is the myth that the disabled and ill exploit systems for personal gain. Stereotypes breed silence and dismissal.
When the disabled sue these businesses, there may be compensation but action is also taken. Yet, is this the only means to achieve these ends?
When the disabled sue these businesses, there may be compensation but action is also taken. Yet, is this the only means to achieve these ends?
When I shared my horror about the story of the local
woman, one of my good friends directed me to a story from NPR’s This American Life titled “Crybabies,”
which discusses one man in particular who has made a huge profit from suing non-ADA
compliant businesses. It’s a great listen if you are interested in this issue.
Important moral questions are raised and they highlight that there is no
regulating body that visits businesses to ensure they are ADA compliant. As
history has taught us, we cannot rely on others to fight our battles, and some have taken matters into their own hands.
Here is the section of the podcast that discusses this:
Here is the section of the podcast that discusses this:
The question I think we should be asking is
what can we do as a society to ensure everyone has access and protection under
the law. The fact that these individuals are suing companies is a symptom of a larger problem.
I've only been a "crybaby" once. I've experienced limited accessibility many times, but one in particular irked me especially. Seven months ago when I could still leave the house regularly and drive, I took my mother to Target to help her find some clothes. My mother cannot drive and needs help with basic tasks. She couldn't do it on her own.
This was my first time using the electric cart at Target. Before this, I would usually tell my husband “I got this. I can walk around the store on my own. Easy” which inevitably led to me standing on the cart and my husband pushing me to a seat in the store. It would have been fun if I wasn't in such bad shape from forcing myself to walk. If you have ever been in most clothing stores, you have probably noticed how tightly-packed each section is. Just getting a shopping cart around can be challenging. I realized very quickly that the electric cart the store provided did not fit in about 40% of the store. I could not help my mother find items, and she could not do it on her own. It became a steaming pile of failure.
I eventually got trapped in one of the sections, and I became so aggravated I went full Hulk. I started slamming into
things to get out, drawing onlookers and stares. I couldn’t get out of the store without
riding that cart so I didn’t care if I knocked everything over so I could leave
the store. Like any red-blooded American, I like shopping and I really love
Target, but I haven’t returned since. I emailed Target right after this to
express my disappointment. Their response made me more angry.
It took them months to respond and when they finally
did, they told me to “find a customer service representative” to help me be
able to look at things in these sections. One: I was trapped so how I was going
to find someone to help me? Two: I don’t want to ask for help just to look at a
pair of jeans!
Should I bring a radio and learn Morse code so I can send out distress signals throughout the store?
Handicapped lady trapped in the sock section. Coordinates unknown. Send help. Now.
I combed through the ADA to see if businesses were required to have aisles the disabled could navigate in all parts of their store. They do not. As long as the disabled can ask for help, then it’s legal for parts of a store to be inaccessible. I'm not done with Target. I still want to communicate to them I don't think this is enough.
Should I bring a radio and learn Morse code so I can send out distress signals throughout the store?
Handicapped lady trapped in the sock section. Coordinates unknown. Send help. Now.
I combed through the ADA to see if businesses were required to have aisles the disabled could navigate in all parts of their store. They do not. As long as the disabled can ask for help, then it’s legal for parts of a store to be inaccessible. I'm not done with Target. I still want to communicate to them I don't think this is enough.
I learned a valuable lesson from this experience:
the disabled do not want to have to ask for help, especially for something simple many of us take for granted. This is something I had never realized in my
able-bodied life. I started to empathize with these individuals who sue businesses
who are not ADA compliant—though I doubt I could go that far. There often can be easy, straight-forward fixes that could assure accessibility. I think most often businesses don't realize they are inaccessible so being a "crybaby" may be the only way for them to know this.
Some advocates are creating other solutions. A disabled man with MS created a website and crowd-sourcing app called AXS Map that allows users to rate businesses based on accessibility, at AXSmap.com. This makes the difficulty of leaving the house, especially going to new places, simpler. Here is the video that outlines how the app works.
Some advocates are creating other solutions. A disabled man with MS created a website and crowd-sourcing app called AXS Map that allows users to rate businesses based on accessibility, at AXSmap.com. This makes the difficulty of leaving the house, especially going to new places, simpler. Here is the video that outlines how the app works.
I don’t often get to leave the house, but when I do I will use this app to rate each business. There aren’t any ratings for businesses in my town so I hope I can get the ball rolling. I hope you also find the app useful too.
Disabled and chronically ill individuals are also
consumers. We have the power to make decisions about where we spend our money
and my studies in consumerism have taught me that those decisions can have social
and political ramifications. Handicapped parking spaces, ramps, elevators, hearing or visual aids, handle bars, and
accessible aisles may present challenges or inconvenience to the non-disabled, yet these things can be lifelines in an ocean that is designed for the able-bodied. I never fully grasped this until I became disabled.
Creating a more accessible world and some
accountability for accessibility will continue to require effort. An accessible
world is a world we can all partake in, and that is truly something worth fighting for.
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