Getting Around the Hard Things

Stephen Hawking is one of my heroes and I'm trying to live by these words. Last week was rough. All the hard things coalesced into a perfect storm, but I’m navigating it. Things seem to change with my mother’s health every day. I’m working on my disability appeal because my claim was denied (they determined I’m not technically “disabled”). I had to resign from my dream job. 

When I was diagnosed with Dysautonomia in 2012 and I started to look out into the ether to see how others coped and lived with it, I came across a lot of stories of people who had to leave their jobs and careers. I’m a workaholic through and through. I thought “no way. That won’t happen to me. There’s no way.” When I left the PhD program in 2011, I didn’t work for a year, but eventually when I finally got a diagnosis and treatment, I was able to go back to teaching. It was challenging to say the least, and I had to adapt everything I knew to make it work. I had varying levels of success. I’d have to go on medical leave usually every other semester because I had pushed myself too far, but I still anticipated having a long career. I knew things would keep improving, or I was at least convincing myself of that.

When a full time, tenure-track position appeared at the college where I was teaching, my husband and I debated whether the timing was right to apply. Getting a tenure-track position is a bit like winning the lottery in academia, especially if you transition from teaching part time. Only a tiny percentage of people finally make the transition, usually after working part time for many many years. My dream for the last 10 years was to teach full time at a community college. It’s the reason I made the crazy decision to get a PhD. I handed in my carefully prepared application and the next day had to go on medical leave for two weeks in spring 2013. This is when I started having trouble walking and breathing—issues I thought were related to pushing myself too hard and would resolve quickly.

Right before they announced interviews, my husband and I decided I would rescind my application. Then, I found out I got an interview; I could not bring myself to do it. I could not walk away from this chance to achieve one of my goals. I went through the process and somehow, some way, somewhere, actually got the position. I had totally just achieved one of my biggest dreams. No big deal. One of my friends who I went to grad school and worked as an adjunct with for years told me "you made it! you're the first one out of all of us to make it."

We were financially stable for the first time, and we started making plans for the future. But it wasn’t meant to be. My struggle to be able to teach full time is documented in detail on this blog so I won’t go into it. Yet, I have absolutely no regrets. I loved the time I had. It was my dream job, I was fulfilled, and I saw myself there until I reached retirement age. I loved the people and students I worked with, and I felt like I was making an imprint on the college, despite my health struggles every day. There’s something deeply satisfying about going from being an adjunct and using your car as your office to getting an entire office to yourself. I decorated it with Harry Potter nerdom and pictures of Yosemite. Only in academia can you really let your freak flag fly and legitimize your eccentricities by turning them into “research.”

I don’t know what’s next. I would love to be able to teach in some capacity again in the future but I really don’t know what will be possible. I can't even wrap my brain around working because I'm focused on being able to breathe, drive again, use my wheelchair less often, reclaim some of my independence, and leave the house successfully and regularly again. These are my goals right now.

My job title right now is “couch barnacle.” I’m a recovering workaholic who spends most of her days sitting. Our culture grooms us to equate success with money, and our identities become so entangled in our careers. It can be so difficult to disentangle your self-worth from these trappings of “success.” When that is ripped from you, it is challenging to not feel an overwhelming sense of failure. It takes some serious mental effort to work through that conditioning. Thank god I have a great therapist I’ve been working with for years now to help with that.

This story is not uncommon. I still read so many stories of people who lose their careers, have to leave college, or lose relationships because of illness. I’ve met people who have lost absolutely everything, but life goes on. Life presses on somehow despite how irrevocably everything can change in an instant. I’ve talked to many people who rebuilt their lives from the ashes and found happiness. They are truly inspiring. You can’t reclaim the old life. You have to make something new.

It’s difficult to avoid letting your worldview be dipped in a pervasive coating of bitterness when you lose so much to illness. It’s a constant struggle to avoid this and look at everyone around me who can work, drive, travel, do whatever they want without bitterness and envy. It can take root in your soul and it could take years to weed it out. I’m a die-hard pessimist but I have really learned how to value what I do have and redefine success on my own terms. These days, if I can vacuum our house or exercise for a few minutes I feel like I’ve earned 10 gold stars and handfuls of chocolate. That’s success for me right now.

My dream now is to live a life where I don’t constantly set myself up for failure and I live within my physical limitations and feel satisfied. That’s really all I want from life.

These are very hard things, but I honestly would not trade the wisdom I have attained over the last few years. I feel like a better person than I was a few years ago. My spirit feels stronger now than it has in years. 

Most of the time, I look at my life and I feel blessed and lucky. I have an amazing husband who is my best friend, my caregiver, and the love of my life. I still get to see friends and family sometimes. I have people I can rely on. I get to sit out in our yard with my cats and drink tea and read most days. Who could want more than that? I still have my passions that I have neglected for too long: music, painting, reading, writing. Terrifically blessed. It will take some time to really process and recover from this but time is something I have.

Despite having to resign from my job, the week had some bright spots. I had an appointment at Stanford with my neurologist’s Nurse Practitioner. I discussed how terrible my last visit at Stanford was and that I do not always feel like I have their support. Going there is often a crapshoot it seems. But this appointment was great. She took my symptoms seriously, and before we left she told me “I’m pulling for you.” I left there feeling like I had support and some hope. The medication I started a few months ago, Mestinon, is really helping my breathing and fatigue issues and they want me to start taking more. She gave me some recent research about POTS and exercise which I will share on this blog once I get through it.

Got my #hospitalglam on while I was at Stanford. Blue compression stockings. Purple cane. Jaunty butterfly scarf

I also saw a Pulmonologist last week. She was kind and thorough and she believes my breathing problems may be related to muscle weakness, a common symptom of Myasthenia. I have another lung function test next week that will give more information. While I was there, she had me try a brief test to see if I had asthma. I had to breathe into a machine that looked like an old Gameboy with a picture of a cloud on it. My husband does a hilarious impersonation of the sounds the cloud made. I wish I had that machine to bring out at parties. No asthma but she explained I will probably get a machine to help me breathe at night but hopefully I won't have to use it during the day too. I don't want to be part robot during the day time as well.

I’m thankful these appointments were uplifting. I needed a win.

Now I go back to my normal life of being a couch barnacle, watching videos of live concerts and documentaries about prehistory on YouTube, being aggravated by American politics, and worried about the state of the world. I want to start thinking seriously about writing my book, finishing recording my album, and getting back to participating in the world again. 

With a hope that keeps burning on an altar of faith and perseverance, unrelenting and determined to burn even brighter some day

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.