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.

The Spoon Theory

You might be wondering why I am talking about utensils in this post, but in the chronic illness community, there is often much discussion related to spoons and not because we all have a strange affinity for cutlery. 

For the chronically ill, it is a battle to perform all the necessary daily tasks (and maybe even some tasks you want to do) within the confines of our limited energy and physical strength. The only way I can describe this to the non-chronically ill is to imagine the worst flu or illness you’ve ever had. You’re sick in bed, exhausted, in pain, you can’t stray too far from a bathroom, yet you are supposed to complete all your typical daily tasks (such as going to work, taking care of children, going to the grocery store, etc). Yet, even accomplishing one of these things is impossible. So even for those who are healthy, you’ve experienced what it’s like to live with limited spoons. 

For the chronically ill, this is what your day to day life is like except it will (for many of us) never go away. Postponing important things until you are flu-free and back to full health isn’t possible. “Spoons” are a metaphor for the limited energy those with chronic illness have and the decisions one has to make to “spend” them, often involving hard choices. Christine Miserandino created this metaphor while describing what her life with Lupus is like to a friend, and you can find her story here. She showed her friend 12 spoons and detailed how to spend them wisely to manage illness and disability while trying to live a full life. Often, six spoons may be needed to manage symptoms a day so six are available to complete daily tasks. The chronically ill and disabled have to choose wisely how to spend those spoons. If you use more than your allotted spoons, you pay for it by losing spoons the days after.

This metaphor has become essential for those who are ill and even those who aren’t to understand the struggles and triumphs of managing illness while trying to live. Like most self-defined labels, “Spoonie” is a term claimed by many as a form of empowerment, understanding, and self-expression. The term connotes a sense of pride and a sense of community. When I tell my husband “I’m out of spoons,” he knows exactly what I mean (though he often tells me “why don’t they say batteries instead of spoons?” he still gets it). Whether you are chronically ill or not, anyone can be initiated with this metaphor. 

This last week for me was a good example of how I live with limited spoons. Miserandino described 12 spoons, but over the last six months as the likely-though-unofficially-diagnosed Myasthenia Gravis combined with POTS is making me often immobile and barely able to leave my couch or bed, I’ve been living with 3-4 spoons a day. It's not enough to do the things I have to do (showering, getting dressed, eating, etc) and the things I should do (clean and exercise). This doesn't include the things I really want to do (play music, leave the house, see friends and family, cook, bake, paint, skydive). Ok, skydiving is not a goal but I like to dream.

Is it possible to get more spoons? Exercise, for me at least, is the only thing that gives me a return on investment for spoons. Deconditioning and exercise intolerance are very common for POTS and MG, but it is important to maintain strength and stamina. I’m a former athlete and have always been active, and exercise has often been more beneficial to me than any medication I’ve ever taken. I reserve spoons for it. I'm also supposed to be doing physical therapy right now, which requires at least 2 spoons.

So I have to choose very wisely. A few months ago, I told my husband I wanted to bake something so he asked me to make some ranger cookies. Since life isn’t worth living without chocolate, I found a recipe that included some. He bought me some ingredients and I printed the recipe.  I wanted to do this for him since he is a fantastic caregiver and I rarely get to do things for him. 

Those ingredients sat in the bag in my kitchen for two months because I couldn’t muster the energy to make them. This week, finally baking them was one of my goals. I saved some spoons and made them (while sitting of course). Having Dysautonomia means you and gravity are frenemies now. But you can be fabulous and cook, bake, teach, sing, anything else while sitting. Although I had to lie on my couch in between batches to recover, I felt badass and accomplished, and he loved them. I overspent on spoons but it was worth it. A crunchy, chocolate-y success.

Husband-approved cookies. Yes, the beard is real

I mentioned in a post last week that I was supposed to go to Stanford this week for an important test (a single fiber EMG) so I could finally get a likely diagnosis for Myasthenia Gravis. I can barely leave the house at all right now so traveling 2.5 hours each way for this trip was going to be a massive endeavor, even with my husband’s help. A trip like this could take 15 spoons, especially since my reward for getting there involves being stabbed with a needle repeatedly. I booked us a hotel to make it a two day trip to make it more manageable. I also had to stop taking the Mestonin I recently started taking (a drug that treats MG and has been used off-label to treat POTS) for this test. I’ve been having difficulty breathing for some time, but along with other symptoms, it has been worsening over the last few months. I’m taking a miniscule dose of Mestonin but it is doing wonders for my breathing issues already. 

When I stopped taking it, the breathing problems returned full force. Not being able to take this medication cut into my 3-spoon-a-day allotment. As soon as I opened my eyes on the day we had to leave, I knew it was going to be a 1-2 spoon kind of day. I was in trouble. I tried to lie in bed for hours before we had to go. We put off leaving as long as possible, but when it was time I knew there was no way. The glorious effects of the Mestonin had worn off and I was looking at having 0 spoons on a long day of traveling. 

The test is rescheduled for a month from now and I’m crossing my fingers I can gather enough spoons to get there. Maybe I'll start a kickstarter campaign for people to donate spoons.

These are examples of the difficult choices and constant measuring of cost to benefit ratios Spoonies have to make. I have been living with POTS for years now, but I’m still learning how to live within my capabilities and limitations. There’s a learning curve with chronic illness. I rejected my limitations and fought against them, but I’ve paid dearly for that folly. The spoon theory has helped me understand that I have to live a life I am physically able to live, not the ideal one I would rather be living. 

Living within your spoon allotment lets you live a fuller, authentic life. I recommend explaining this metaphor to those close to you so they understand that despite your limitations, you are doing the best you can. Forks, knives, spoons, whatever, we’re chronic illness warriors, living bravely and with dignity. Use your spoons to live the fullest life possible.

A Spoonie created a choose-your-own adventure game based on the spoon theory that I highly recommend, especially for non-Spoonies, to understand what it's like to live with chronic illness. You can find it here