When You Have to Use a Disabled Parking Placard

I see it almost daily. In the health communities I’m in, someone will say “I need to get a disabled placard but I’m afraid to.” I see the images of awful notes left on the car of someone who uses a placard. You can find examples here, here, here, and here. I could keep going.

This discriminatory BS needs to stop.

I too had tremendous ambivalence about asking my doctor for a disabled placard. I didn’t even consider it an option until my mobility issues started in 2013. I was at the point where I had to drive between my classes and buildings on the college campus where I was teaching because I could no longer manage the walking. Anyone who has been to a college campus knows that finding a parking spot, just one spot, is worth its weight in gold. But I was having to find multiple parking spots all day while trying to get to class on time, and I would inevitably only be able to find a spot far in the back, which made my driving to get nearer the building pointless. It was becoming a daily crisis for me as I was desperately struggling to have enough energy to keep teaching and getting through the day. I could not waste all the energy I had trying to walk any distance and failing. 

So I went to the doctor I trusted the most, my cardiologist, to ask him to sign the form. I printed it off the DMV website. Then I felt completely ridiculous asking for a disabled placard, no matter how desperately I needed it. I even told him how absurd it felt to ask him for it. He signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. "Passing" as able-bodied is significantly easier than trying to live with disability, and I was coasting on denial as long as I could. But I asked him to sign the form because I needed to be able to work. I justified it to myself by saying “I’ll only use it on the days I really need it. I won’t take up a spot for someone who really needs it. I’m not technically disabled, and I don’t want to endure anyone’s ridicule or derision because I ‘look fine.’ I won’t use it very often.”

But I was wrong. I was and am disabled. I got the placard and ended up using it every day because it was a life saver. I wished that I had gotten it sooner when I needed it, long before I finally talked to my doctor about it. I wish that worrying about what others would say or the fear that someone would leave a nasty note on my car wouldn’t have gotten in the way of me using an invaluable resource I needed.

There are many who are going through this right now and are debating whether they should get a placard and if they want to deal with the discrimination that can come with it. They probably read these horror stories every day and see the nasty notes people leave on someone’s car because not enough people understand that most disabilities and chronic conditions are invisible.

I imagine there are a variety of reasons people leave notes on cars or make discriminatory comments to the disabled. They may believe they are standing up for those who are “actually disabled,” acting as vigilante warriors protecting a “privilege” that only a select few are “entitled” to. They may believe that people are exploiting the system for personal gain or even feel envy that someone has access to a prime parking spot anyone would want. They may assume that all disabilities are visible and that only individuals who require a mobility aid qualify as disabled.

When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop.

I count myself  “lucky” because I’ve never had a note left on my car. I had to start using a cane right after I got my disabled placard so my disability was no longer invisible. I have gotten harsh stares or questioning glances when I have used the motorized carts at stores. The last time I drove myself to a store and used the electric cart (it’s been years now since I could do this), an elderly man got angry with me because I used the last one. I needed it as much as he did. I was just trying to pick up my medications without falling or fainting in a store. Now, when I leave the house I have to use my wheelchair almost all the time.

I bring my own chair, thank you very much.

When someone who doesn't "look disabled" uses a disabled placard or an electric cart, we need to remember these points:

 1. Most disabilities and chronic conditions are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, mental illness, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate.

2. Police officers, parking attendants, etc. can ask someone to show them the permit that the disabled are required to carry when they use a placard. People do not need to enact their own form of vigilante justice. There is a system in place to make sure that those who use the placards are permitted to use them.

3. No one is entitled to an explanation or “proof” of someone’s disability, especially if you do not know the person. No one is required to “prove” their disability to anyone. Believing that someone is required to explain their disability is pure ableism.

 4. If someone would like to help the disabled, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments. 

You can support legislation that helps the disabled. We have the Americans with Disabilities Act in this country but the law is not perfect. We need more laws and protection for the disabled so that they can enjoy the same privileges and access those without disabilities enjoy. You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.” You can educate yourself about all that qualifies as a disability and see that 1 in 5 people in the U.S. are disabled.

 5. There are essentially no upsides to having a disability. The disabled face hurdles every day that the able-bodied cannot fathom. If you are concerned that the disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but don’t act on it. Our society treats the disabled as a protected class and enables them tools to improve their quality of life so they can be full participants in our society. The ADA was only passed in relatively recently, 1990, and it provided legal protection from discrimination and made accessibility in public places for the disabled the law. We should celebrate the fact that those with disabilities have access to tools that improve their lives.

For any of you out there who are putting off getting the placard because you fear the ridicule or are struggling to recognize yourself as “disabled,” I know what you are going through but we must use every means available to us to help us succeed. Even if someone does leave a nasty note on your car or makes a disparaging comment to you, you can keep fighting and you can survive it. It comes from ignorance and we can only hope that someday they will understand the injustice of their act. You are making the right choice in protecting your health.

Don't let anyone diminish the choices you have to make to achieve a higher quality of life. 

The Week that Was, January 8th

I'm considering trying to write some weekly or bi-weekly updates on the blog to supplement the longer, topic-driven posts I usually write. I always need a reason and purpose for doing anything here, especially to convince myself that this is not an exercise in narcissism, so doing this might highlight a bit of “slice of life” of living with illness, with emphasis on “living” to show that although there is sickness here there is life too. This might help me post more too.

I had a bit of a miraculous week this week. Let the record show, it is possible to have an ok week!

* The last few months have been especially rough. I felt like I’ve been just surviving day to day, so a week where I wasn’t just surviving has been a welcome change. I think the insanely expensive, medical-grade probiotics I’ve been using are helping. I'm taking them to kill my current intestinal infection and to treat the constant oral thrush I have, which is caused by my steroid inhaler and rescue inhaler I have to use multiple times a day. I have to use the inhalers to help offset the respiratory weakness from Myasthenia. Ah, the constant struggle to manage side effects and even side effects of side effects. Sometimes it’s more difficult than managing the primary illness. 

But I think they are helping. With how expensive they are, they better. My GI doctor originally gave me these probiotics and when I see him again in two weeks I need to ask him for a cheaper option because these are out-of-pocket, not a prescription. Oof. 

Designer-priced bacteria

* So I took advantage of this miraculous week and my husband and I went to our local arts center (which we had inexcusably never been to) that’s right down the street. They have an exhibit of one of my favorite artists, Alphonse Mucha. My mom loved him and some of my first memories are staring at the prints she had of his work. Now I have one of her prints and some of my own. The exhibit ends this weekend and I would’ve never forgiven myself if I had missed it. They had some original drawings, some prints and lithographs, and a lot of information about what inspired him and his life. I had no idea that his nationalist sentiments were so pivotal to his work. It was a great experience.

I can’t remember the last time my husband and I went somewhere for fun together that wasn’t appointment-related so something like this was overdue. Despite the fact that my husband is also my caregiver, I’m learning it’s important to still maintain our relationship as husband and wife—to cultivate and nurture that role just as I did before I got ill. We are always trying to come up with things to do together.

The building was luckily very accessible and had an elevator to get to the other floors, which is always welcome. I’m hoping we can go there again when they have other exhibits.

* Although, there is constant debate about whether those with chronic illness and autoimmune diseases should get a flu shot, I get one every year. If you aren’t sure if you should or not, talk to your doctor about it. For me, the risk of getting the flu outweighs whatever risk there is with the immunization. I’ve never had a problem with it. I always get it in January but I swore last year I was going to get it when it came out in October. I still haven’t gotten it.

So yesterday, we headed out to Costco so I could finally get the shot. I was feeling really terrible yesterday (likely the fallout from our outing) so while we were in the car I told husband I didn’t want to go. As we circled back home, we drove by a new thrift store and I suggested we make a quick stop. We went for a few minutes and then husband rolled me over to the used bookstore next to it. I picked up a few books I’ve wanted for a long time. We left the house together for something fun TWICE this week. It’s unbelievable.

I probably should’ve spent yesterday resting or really pushed myself to finally get my flu shot, but I spend most of my life making good decisions and doing whatever my body demands that I do. I guess sometimes it’s ok to not make good decisions in favor of living a little.

* I talk to quite a few Spoonies on Twitter and I had a conversation yesterday with someone in Canada. She posted a picture of an accessible dressing room that looked like a dream but then explained that unlike the Americans with Disabilities Act we have here in the states, Canada has no comparable legislation. Someone else chimed in and said the Netherlands also does not. I had no idea so many industrialized nations, even ones who are politically more progressive than this country, have no accessibility legislation. They have no legal recourse to ensure public places are accessible. It solidified for me that disabled rights are a global issue, not just a national or local issue. Although the ADA has limitations and lacks enforcement, it does provide legal protection and makes the disabled a protected class of citizens in this country. We definitely have more work to do globally.

* When I’m feeling slightly better, it’s like a veil is lifted from my life, the perpetual shadow recedes and I can think about the future instead of just surviving moment to moment or each day. As I’ve been feeling better this week, I’ve been thinking more about changes and additions I want to make to this blog and my ultimate project of writing a book. I still have so much research, reading, and planning to do. I started reading Laurie Edwards' In the Kingdom of the Sick, which I’ve started multiple times but never finished. Eventually I’ll have a review of it in the Spoonie Reads section (along with all the other books I finished recently).

*It's been rainy here all week (who knew that was possible in California?) and playing my keyboard while it rains is one of my favorite things to do. I've been playing one of my favorite standards, "When Sunny Gets Blue," which is a perfect rainy day song: "Pitter, patter. Pitter, patter. Love is gone so what could matter?"

* One of my Spoonie friends who I talk to regularly (I even sent her a Christmas card) sent me a link to this great article about what it’s really like to live with chronic illness, in contrast to media representations of illness. It’s a great read. I also recommend this article from a woman on the patient advisory board at Dysautonomia International about her struggle to get a diagnosis for POTS. 

* I have to do an MRI at Stanford next week so I'm trying to mentally prepare for the long trek. Our last trip there wiped me out for weeks so I'm hoping this trip won't be quite so exhausting.

* I have exercised almost every day this week, wrote two blog posts, and I’m having kind of a good hair day today. A miraculous week indeed.

I hope that all of you are having an ok week.

Let's Talk About that Kylie Jenner Image

I want to respond to something that happened this week that I'm still trying to make sense of.

Perhaps you have seen that image above of Kylie Jenner in a wheelchair on the cover of Interview Magazine and heard about the backlash from it. I’m sure like many of you, if I see anyone from the Kardashian clan mentioned in an article I ignore it. I’m convinced every time someone clicks on a Kim Kardashian article, an angel loses its wings. 

Yet, this image irked me. Most people are blaming Kylie, but I honestly doubt she made any conscious choices besides agreeing to pose for the images for profit. It was the choice of those involved at the magazine to use a wheelchair as a prop. She was literally along for the ride. As the backlash to the image began, it’s a comment from a representative from the magazine that irked me the most:

"At Interview, we are proud of our tradition of working with great artists and empowering them to realize their distinct and often bold visions. The Kylie Jenner cover by Steven Klein, which references the British artist Allen Jones, is a part of this tradition, placing Kylie in a variety of positions of power and control and exploring her image as an object of vast media scrutiny." 

I’ve been trying to formulate why exactly this image and comment are so problematic and I want to be able to communicate this from my standpoint as a disabled woman.

The problem is the choice to use a wheelchair as a prop to highlight Kylie’s supposed vulnerability because of media scrutiny fetishizes societal views of the “powerlessness” of the disabled. The “media scrutiny” has been incredibly profitable for her and is being falsely correlated to the experience of the disabled here. This is essentially disability tourism, trying to inhabit a marginalized position without the physical or cultural realities the disabled experience, such as navigating a world that is not designed for us. The editorial staff can delude themselves that they are making a political statement or high art. But we have to call it what it is: distasteful and offensive.

Disability, like other facets of identity, is a label externally and legally defined by society and not one that is chosen.  It is a label that can come with a certain level of marginalization, and like many externally-defined labels, stereotyping. The stereotype of the “restriction” and “powerlessness” of disability is fetishized and even parodied in this image. This parody silences the truth that a wheelchair is a tool for the disabled that enables freedom, access, and independence.

The ADA just celebrated its 25^th anniversary and the disabled are a protected class of citizens, but this was not always the case. It’s important to remember this. Yet, the disabled continue to face hurdles with full employment and participation in society. I mentioned in another post the limitations of the ADA and that the disabled continue to deal with limited accessibility in public and private spaces. These are some of the material realities that are invisible in this image.

The disabled are often treated as invisible in society. If you look at media, you will see very limited representations of the disabled and often you will see disability given a negative connotation—it’s treated as some sort of obstacle to “overcome,” a physical vulnerability, or a reason for pity or empathy. Disability is also often defined rigidly as a physical manifestation that is visible to the able-bodied, as if every disability could be “read” at a glance. Disability is not defined by using a wheelchair. Disability comes in a variety of forms and most of them are invisible. 

It’s not the fetishization that makes this image so disturbing for me. It’s the perpetuation of the invisibility and silence of the disabled community. I look at this image and see myself and others represented by that wheelchair and I am represented as a prop. A costume choice. A fashion statement. My experience is not just objectified; it is rendered silent. 

Ironically, though the intention was to make Kylie the subject of this image, the wheelchair has become the subject.

Kylie has never experienced being disabled or dealt with painful scrutiny or pressure to conform to societal expectations about what disability “looks like.” I have lived as able-bodied and disabled now so I have experienced both worlds. We need more voices from the disabled to challenge rigid definitions of disability, to express the experience of being disabled and the struggles and triumphs that come with that label, and more importantly, to show that the disabled are three-dimensional human beings. 

Often injustice comes in the form of a thousand cuts, a thousand slights that slice deeper and deeper into our sense of worth, leaving unseen scars that are continually re-opened. I have experienced derision because of my illness and disability and in the health communities I’m in people share the derision they experience daily. Since becoming ill and disabled, I am witness to injustice every day in some form beyond my own personal experience. Starting this blog is a way for me to give voice to the experiences I’ve seen discussed every day.

I’ve been asked “do you really need to use that cane?” I’ve had medical professionals ask in an accusatory tone “why are you in a wheelchair?” I’ve heard comments about being “too young” to rely on mobility aids. But worst of all, when I’m in my wheelchair and I’m with my husband, I often unwillingly become invisible. People often look through me and speak only to him.

I guess in some ways I’m “lucky” I never had a note left on my car when I have used disabled parking spots because I had to start using a mobility aid right after I got my disabled pass. My disability is “visible” to those who feel they are entitled to “proof” I suppose. I see people post pictures of the notes left on their cars often. I see comments constantly about people putting off getting a disabled placard even though they need one. I did as well.

I resisted using mobility aids because it forced me to “come out” with my illness. I desperately wanted to “pass” and I was able to for some time. If you can “pass,” you can be free of this derision, or the prying questions, or the constant staring. I put myself in constant precarious situations when I was trying to pass and forced myself to do things I physically could not do, ultimately making myself worse in the end.

It wasn’t worth it.

I’ve only recently began to get comfortable with the label of being “disabled” and what comes with that label. I didn’t choose this label. It chose me. My self-image has been radically transformed and how others view me and treat me in the world has also changed. It’s been a tremendous hurdle adjusting to this, but I’m getting there.

I put using off a wheelchair for a long time, even after my doctor gave me a prescription for one and my husband insisted that I needed to finally accept that I needed one. Once I finally started using a wheelchair, I realized I had so much freedom. I could go somewhere without having to immediately find a chair. I could navigate stores again. I could leave the house with more success. I didn’t have to count the steps from my car to a door to try to figure out if I could make it. This sense of freedom negated the comments and the staring. They just don’t really get under my skin anymore. I don’t have to “prove” anything to anyone. I’m just living my life and doing what I have to do to live it the best I can. All that time I put off using a wheelchair was wasted time.

My wheelchair gives me power. This is something that the editorial staff at Interview Magazine or people who question my need for mobility aids don’t understand. Fetishizing societal views of the “powerlessness” of the disabled perpetuates a one-dimensional stereotype of the disabled. The gilded wheelchair used as a prop is a perfect metaphor for the vacuity of the stereotype they are peddling in the image.

The voices of the disabled responding to this image or any issue related to disability should be privileged and heard to challenge the silence perpetuated in this image. This image represents one of the thousand tiny cuts of injustice and though it may be a minor cut, it deserves analysis to avoid more cuts in the future.

You can read more articles commenting on the disabled view of this image here, here, and here 

Happy Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month and since I’ve been mentioning it so much over the last year on this blog I wanted to take this opportunity to explain this obscure condition that needs more awareness.

I had never heard of MG before June of last year until I glanced at the results of some of my blood work and saw the words “serological Myasthenia Gravis.” When I saw my neurologist last month, he explained that he was looking for the antibodies related to autonomic dysfunction but accidentally discovered that I had the antibodies typical for MG. I imagine that some or maybe many with MG fall into the condition through happenstance. If you laughed at “fall,” then you are acquainted with this peculiar disease.

Since then, I have learned so much about this condition. MG is a rare neuromuscular autoimmune disease that causes weakness in voluntary muscle movements. It’s not as rarely diagnosed as POTS and has an established history of research and treatment. Like other autoimmune diseases, the immune system sees the body as a foreign entity with MG and begins attacking itself. It does not attack the muscles but specifically the receptors that allow muscles and the brain to communicate. Maybe you can see the problem here. Here is a great infographic that does a better job explaining this. I’m just a Humanities nerd, so the science bit is always above my head:

As mentioned above, common symptoms include droopy eyelids and weakness in muscles that affect facial movement, chewing, breathing, swallowing, talking, and limb mobility. MG was termed the “rag doll disease” because of the severity of the muscle weakness. The ocular symptoms are the most common symptom in MG, and some only experience the ocular symptoms. The level of disability and severity of symptoms can really vary person to person. Men, women, children, and even animals can get the disease, and in some cases the disease can go into remission.

Like Dysautonomia, MG can be considered an invisible illness yet the symptoms can manifest visibly. As with most complex conditions, diagnosis can be tricky. I am going on year three of working toward a diagnosis but for some it can take many years. There are blood tests that can identify the antibodies that are specific to MG, EMG tests, breathing tests, and your medical history can help your doctor determine if you have this disease. Myasthenia is usually only fatal during a “Myasthenic Crisis,” which means respiratory muscles become paralyzed and the patient needs ventilation.

About two and a half years ago, I started having difficulty walking and my breathing problem that started with POTS was getting worse. I tried to brush it off for a long time. When I saw my doctor’s NP, she also brushed it off. Yet, my mobility was rapidly declining. I had to start driving between all of my classes I was teaching and eventually, after much fighting, fretting, and cursing my fate, I started using a cane. Then a few months later, I had to get a walker and then over the last 9 months, I've had to use a wheelchair. My breathing problem has also declined rapidly.

My doctor had me start taking Mestinon, a drug commonly used to treat MG. This drug provides the acetylcholine that the immune system attacks in MG so that the brain and muscles can communicate once again.  My breathing improved immediately with this drug, and I’m dependent on it to breathe normally. From August-November, I spent almost every day in bed, but since I started the Mestinon I only have to lie in bed on bad days or if I push myself too hard. It has given me some quality of life back. Yet, this is a short acting drug and has to be taken every 8 hours. It treats the symptoms but does not treat the mechanism of MG by stopping the body from attacking itself. 

I have documented my journey with diagnosis extensively on this blog because it’s been a difficult ride. I have the antibodies but the number is small and my EMG results were mostly normal. If one the antibodies for MG, it is considered a “serological diagnosis." Some with MG are "seropositive" with the antibodies and some are "seronegative" who test negative for all of the antibodies. I also did a spirometry breathing test earlier this year and that was very abnormal. My neurologist explained that it’s still indeterminate at this time. I’m also having some problems such as intense balance issues that are not typically related to MG. Like I said, the journey to diagnosis with many complex conditions is long and bumpy.

Treatment usually includes Mestinon, immunosupressants like Prednisone, IVIG, and plasmapheresis. In my experience with Dysautonomia, the treatments and research about the condition have been extremely limited and recent. There are “common” treatments for Dysautonomia but essentially every treatment is “off-label,” meaning there are no drugs to treat it and doctors use drugs for other conditions that have beneficial side effects for Dysautonomia. There are established treatments for MG and it has a much longer history of research. Yet, these treatments for MG can come with serious side effects. My doctor explained that this is why he has been waiting to be absolutely certain before diagnosing me. I know that many have also heard this from their doctors. I have learned an important lesson about the stakes involved in diagnosis this year. 

The thymus can play a role in Myasthenia and about 15% of people require a thymectomy. The thymus can become enlarged or have tumors, either benign and rarely malignant, called "thymomas." Removal of the thymus offers the best chance of remission of symptoms compared to other treatments. I have even heard recently of doctors removing the thymus even if there aren’t any problems with it because that can be beneficial sometimes. Just a few days ago, I had a CT Scan of my thymus to see if it needs to be removed.

Yet, the fact that there is treatment provides hope, and hope is a treatment in itself.

Maybe you found this blog and this post when searching about MG, or POTS, or chronic illness, and information and knowledge is a vital step in learning about conditions you may have and all of us raising awareness about invisible and rarely diagnosed conditions. Yet, knowledge is only a piece of the puzzle.

When you get a diagnosis, arming yourself with knowledge is only half the battle. Something that I wish someone would’ve told me when this chronic illness journey began in 2011 is that acceptance is your greatest survival tool in your arsenal in living with illness. There will be self-blame, guilt, and profound disappointment, but acceptance can help you live a full life no matter what illness throws at you. Someone in the great circle of being pointed their finger and chose you as the lucky winner to bear this absurd burden. I try to remember this is not my fault. I didn’t choose this, but I accept this burden and seek to make a life bearing it with grace and dignity. These are hard-fought lessons I am continuing to learn and I think they deserve a place among the science and physical realities of any illness.

If you are out in social media, check out and participate in the hashtag #IhaveheardofMG, a movement to give MG more awareness and a face for the condition. 

I leave you with this great video from 1935 that shows the early days of the discovery of acetylcholine treatment for MG. Wait until the end when the woman begins to mop. Every time I attempt to do house work I think of the smile this woman has on her face because I couldn’t do it without that drug either. 

Also, check out the links section of the blog for more information about Myasthenia.

Desperately Seeking Accessibility

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 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:

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. 

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.

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.