Here’s why Voting Matters to Disabled People

Here’s why Voting Matters to Disabled People

Earlier this year The House passed a bill that would strip down the Americans with Disabilities Act of 1990 (ADA), a bill that is widely considered one of the most expansive pieces of civil rights legislation in America.

Signed into law by President George H.W. Bush, it was modeled after the Civil Rights Act of 1964. The ADA was later amended to defend its original text and signed by President George W. Bush.

Within the ADA’s dense text is Title III, which establishes regulations for businesses and non-profits to comply with accessibilities for disabled people.

While no piece of legislation is perfect, the ADA’s Title III is certainly fair. But some don’t feel that way, most notably Rep. Ted Poe of Texas, the most vocal sponsor of the ADA Education and Reform Act of 2017 (HR 620).

Last year HR 620 passed the House in a 225 to 192 vote. The vast majority of Republicans, along with 12 Democrats, voted for the bill, which then moved to the Senate, where for months I dreaded it would make it to a floor vote and eventually be signed into law by President Trump. Thankfully that hasn’t happened … yet.

The main point of HR 620, as I see it, is to prevent frivolous lawsuits brought against businesses for not complying with regulations established by the ADA. But I don’t see how frivolous lawsuits actually exist in this case. Is there really such a thing as a frivolous lawsuit as it pertains to ensuring that disabled people can gain access to a facility, like say, a doctor’s office where they seek treatment for their condition?

HR 620 makes a meager concession to disabled people by developing “a program to educate state and local governments and property owners on strategies for promoting access to public accommodations for persons with a disability.” The only problem is that the ADA has already established this kind of program and yet lawsuits are still necessary to make business owners comply with the law.

The irony of HR 620 is that it aims at reforming a law which has been vigorously supported by two Republican presidents from Texas, yet Rep. Poe and other members of Congress from Texas, the nation’s second largest state, are the ones sponsoring HR 620. What’s more, while the bill aims at eliminating “frivolous” lawsuits, the entire state of Texas only had 267 ADA lawsuits in 2016.

According to HR 620’s official press release, “There is a now whole industry made up of people who prey on small business owners and file unnecessary abusive lawsuits that abuse both the ADA and the business owners.”

But as the American Civil Liberties Union points out, lawsuits seeking “money damages” are not allowed under Title III, except for some state laws, which would not be changed by HR 620 anyway. As it stands, all lawsuits brought against business owners and non-profits under the current ADA regulations are about compliance, not financial damages.

For the sponsors of HR 620 to claim that disabled people are “preying” on business owners is absurd and offensive. It would be impossible for a disabled person to profit from the lawsuits. Their attorneys may profit from the lawsuits, but disabled people are the ones at the heart of the matter. We shouldn’t be punished because some lawyers are capitalizing on the ADA. People with disabilities still need access to buildings and barriers to those buildings still need to be removed. We — disabled people — are the ones trying to buy groceries, but can’t because the buildings don’t meet regulations.

Under HR 620, when someone with a disability first identifies an architectural barrier they would have to serve the business owner with a written complaint in which they would have 60 days to provide a written outline of how the barrier will be removed. Then the owner has another 120 days to “make substantial progress” on those plans. So minimally that’s six months that the disabled person has to wait for the barrier to even be improved. The bill’s crafty language presents the possibility for the business owner to draw out the barrier’s removal for months depending on whether the progress is deemed substantial.

Now, for me, and I suspect most disabled people, six months is an unreasonable amount of time to wait for substantial progress of a barrier removal. And that time frame doesn’t include how long it would take if the progress wasn’t deemed “substantial.” At that point a lawsuit would finally be allowed and the issue would likely be tied up in court for many additional months, or even years. For a business owner (or a politician who supports the bill) six months may not matter, but when a disabled person’s health depends on seeing a doctor in a building that isn’t wheelchair accessible, that six months is critical.

If you read my blog then you know I am a disabled person. I suffer from a chronic illness called myalgic encephalomyelitis (ME), a multi-system disease that studies have shown is both an inflammatory condition and a metabolic disorder. ME has left me unable to walk. While I’ve been sick for eight years now, I’ve only been officially disabled for the last three. Last year I bought my first wheelchair. When I’ve been well enough to use it I have discovered how unimaginably difficult it is to get around my house. And that’s just at home, I can’t imagine how much trouble I would have navigating in public. That is a whole other issue — there are more objects and people to bump into, but most difficult is trying to get in and out of buildings. Doors must be opened and closed, stairs must be detoured, objects must be avoided.

Filing a lawsuit against a business that makes it impossible for me to navigate would certainly not be my first course of action. For starters, it would almost guarantee that the problem would not be fixed in a timely manner. My goal is to be able to get around, not be tied up for months in court.

Luckily, the bill has stalled in the Senate, mostly thanks to the outspokenness of Sen. Tammy Duckworth of Illinois. She is disabled and back in April quickly gathered a group of 42 of her Senate colleagues to sign a letter saying they all oppose HR 620 and would essentially filibuster any attempts to vote on it. She also wrote an Op-Ed for The Washington Post about her views on the bill. And it seems that her efforts have paid off, least for now — it appears HR 620 is dead and The ADA and rights of disabled people are safe.

But that the bill made it through The House is alarming. Those who support HR 620 grossly overestimate the desire of disabled people to bring lawsuits against businesses and non-profits. Disabled people, especially those like myself who suffer from a chronic illness, have limited energy and resources, filing a lawsuit is a last resort for us. But sometimes it’s the only option we have in order to get an accessibility barrier removed promptly. If HR 620 had been enacted, not only would it have jeopardized the health and quality of life of disabled people, it would have put us at a further disadvantage in defending our civil rights. But thanks to Sen. Duckworth and others, we can save our energy for other issues.

It’s a good reminder that voting the right people into office — the people who are going to look out for the issues that mean the most to you, the issues that directly impact your life — is crucial. I didn’t vote Sen. Duckworth into office because I don’t live in her state, but I did vote for two of the senators who signed her letter to the leadership opposing the bill. And that is the kind of representation that matters, at least to me.

With the midterm elections less than a month away, I want to encourage everyone to vote, regardless of your political affiliations. At the very least it’s the best way to ensure bills, like HR 620 or another bill that impacts your life, are handled properly.

BEFORE YOU GO…

1. Thanks for reading!

2. If you would like to donate to support this blog I would be equally grateful!

3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would LOVE to see you rocking some Show ME the Money apparel like these lovely friends…

What We‘ve got Here is a Failure to Communicate

What We‘ve got Here is a Failure to Communicate

Since many people are spending time with family members today (Thanksgiving — US), some of whom you may disagree, I thought it would be good to write a post about every detail of my current and past political views. Just joking. I’m sure you are tired of reading about all the clashes between liberals and conservatives. But I do want to write about how much it sucks when you can’t communicate.

Do you remember that famous line — “What we’ve got here is a failure to communicate” — from one of my favorite films, Cool Hand Luke?

I always think of that line when I have trouble getting my point across, although obviously not because I’m feuding with a hard ass warden. No, it’s more that I think of the line as a metaphor which pertains to my trouble communicating and the poor communication in our society as a whole. The inability to communicate with each other while failing to make any kind of progress is obviously an issue in the US and around the world right now, but it’s also a problem I’ve dealt with in my personal life. And I don’t mean I have been forced to live with people who have strong opposing political views, although I’m sure there are many people in that exact situation with the current political landscape what it is today.

For the last three years I’ve been unable to speak. At times I have spoken short sentences, but for the most part, particularly during the 18 month stretch from January 2015 to July 2016, I was unable to speak at all. With this disability came a frantic search for alternative, nonverbal forms of communication. I have used a small whiteboard with letters to spell out words, I’ve traced words on people’s hands, and I’ve essentially developed my own sign language to communicate with my friends, family, and caregivers.

No form of communication is perfect or even guaranteed to be effective, and my nonverbal communication has been especially flawed. But it’s all I have. It has, quite often, left me and the people around me exasperated with each other while trying to play a twisted and cruel game of Charades or Hang Man or Wheel of Fortune or any number of games that share similarities to how I communicate. These games are meant to be fun, and as many people know, trying to communicate something that isn’t being received is not fun; it is maddening, even heartbreaking.

This is to say that it is incredibly frustrating when you are trying to communicate and it feels like you’re just wasting your energy. I frequently find myself staring at the person I’m communicating with, thoroughly bothered, as if they should be able to read my mind, or more realistically, automatically know what my makeshift communication means. This is just instinctively how I react. To me it’s as if I’m talking, so how can someone not understand my words? We both speak the same language — English — but I guess I forget that I’m not actually speaking, I’m gesturing. So I probably come off as an asshole sometimes, at least by my body language, but it’s only because I’m trying so hard to communicate and only exhausting myself.

This is something that people with limited energy, particularly those with illnesses like mine, know all too well. It is something that we experience while doing the simplest tasks. So imagine how it feels to try to make a significant change in the world. It’s nearly impossible, if not entirely so. With the US and many other countries so divided at the moment, I’m sure everyone can relate to this in some degree. I imagine everybody has been involved in a political argument, either online or in person, during the last year or two. And seeing how this is the first holiday season with a new president in the US, I’m sure there will be plenty of arguments to come. I certainly have had my share of these disagreements. In doing so I felt a familiar sort of frustration, as if what I said was not registering with whomever my comments were directed towards. In some ways this is just how it goes, especially right now. We have to pick our battles wisely and surrender to the fact that our message isn’t always, or even most often, going to be understood. In the form of political debate, we may not change anybody’s mind. And that’s okay. There is only so much that we can do and control. One thing we can control, however, is how we react to the frustration we feel in these situations.

A few days ago I was trying to ask my caregiver to bring me my daily medications. It had nothing to do with politics, thankfully, but it was a prime example of how easy miscommunication can happen.

Because I couldn’t speak, I used a hand signal for “pills” that I’ve been using for at least two years now. My caregiver hasn’t been working with me that long, but she has certainly been here long enough that the signal should be engrained in her mind. And if nothing else, there is a cheat sheet nearby with my hand signals written on it. But for one reason or another all of these efforts seemed to break down and she couldn’t figure out what I wanted. This type of thing has happened countless times during my time as an aphonic person, yet it hasn’t gotten easier. Over the years I have tried and failed to develop a zen-like mentality that allows me to transcend these cringeworthy moments. Instead, I usually resort to showing my caregiver a different hand signal which means, “Please step out of the room,” and no, it’s not my middle finger. Then, once she has vacated the area, I reach for the lightest, cheapest object I can find — preferably one that will make a satisfying crunch when driven into a hard surface. Then, finally, channeling all of my rage and frustration, I fling it at the wall.

A film crew recently asked one of my caregivers “Where does he get the strength to throw things?” This is a valid question. After all, I can’t even hold a glass of water, how the hell can I throw something across the room? Well, it’s a very strategic (and cathartic) process. I’ve learned through trial and error that throwing something light is the only option. I can’t throw a glass or, say, a book across the room. But I can throw sunglasses or pens or pill bottle caps. Also, these cathartic outbursts do not go unpunished. I use valuable energy that puts me at a further deficit as I go about the rest of my day trying to take care of my needs. Not to mention, the arm I used to throw is always rendered essentially useless for the next couple days. And still, to be honest, it’s usually worth the pain.

After the latest failure to communicate with my caregiver, I moved on and figured out a way to get my needs met, but by no means was it easy or did it come without stress. And therein lies the metaphor for the current political discourse we as a society are subjecting each other to on a daily basis. It’s stressful and difficult and rarely is it constructive, but we will keep moving forward and we will figure out a way to get our needs met.

I’m not going to sugar coat anything and tell you to be grateful for this or that, but I do have some advice. If you find yourself arguing with a relative over the state of the country this holiday season, if you can, try to let cooler heads prevail. It is wiser to maintain your sanity than to lose your shit in front of your entire family. And if you must let your anger out, like me, wait until you’re alone, find the cheapest breakable item in the room, and then hurl it at the wall.

A few things before we part:

1. Thank you so much for reading! This is my 100th post, so hey, that’s something!

2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

3. If you would like to donate to support this blog I would be equally grateful!