In an Emergency, Disabled People Are on Their Own

In an Emergency, Disabled People Are on Their Own

Last month I was without electricity for several days. If you pay attention to the news, or you’re like me and listlessly scroll through Twitter, then you probably heard about the power outages here in California.

In October, Pacific Gas & Electric (PGE), one of the nation’s largest utilities, voluntarily cut power to more than a million people in 36 counties in Northern California, at least three separate times. The purpose was to reduce the risk of wildfires, of which the company has admitted their power lines have caused in the past.

The voluntary power outages have done little, if anything, to reduce wildfires in the state. Despite the outages, fires continued to rage from Sonoma to Los Angeles throughout last month. And while the environmental implications and shortcomings of PGE have made national headlines, one crucial aspect has not: the impact these fires have on sick and disabled people.  

Thankfully my family and neighbors are incredibly thoughtful and have looked out for me in these situations. In the past, when our area has been without power, we’ve also lost our running water because it has to be pumped uphill to our house. But now that wildfires and power outages have intensified and become more common in California, especially in the fall months, we’ve had to adapt. Our neighbors have let us use a backup generator to keep food from spoiling. They have also lobbied the local water district to use generators to keep our water running during outages. This is an example of a community and government responding to people’s needs. But others haven’t been as lucky.

In one example, while responding to a tweet, the City of Berkeley told a concerned citizen that people who are dependent on electrical medical devices should “use their own resources” or go to an emergency room, instead of offering help directly.

How are disabled people supposed to go to the ER when hospitals and other medical facilities have had to evacuate during the wildfires? These patients and many other bedridden and home-bound people have been left without power to run lifesaving or otherwise essential medical devices.

In another example, a man in Sonoma County died when the power was shut off and he could no longer run his oxygen machine. This is the kind of thing that should be alarming to everyone, and to those of us who are disabled and equally as vulnerable, well, it’s just fucking scary.

Each fall, for the last few years, I’ve lived on edge, hoping a major wildfire doesn’t strike where I live and force me to choose between the lesser of two evils–stay and risk dying in my home or evacuate and risk making myself sicker and getting injured. Just like the sick and disabled people in Berkeley, I would be screwed, left to rely on my own “resources.” I would have to figure out how to get myself into a vehicle and out of danger when I haven’t even been able to get into a wheelchair for the last year.

Some people might say, well, that’s just how it goes–sick and disabled people get left behind if they can’t fend for themselves. But, really, that’s bullshit. I mean, come on, people run into burning buildings to save their pets, a large municipality like Berkeley can’t set up a shelter and some generators specifically for people who need medical care? It’s negligent, and lazy.

Here we are, in mid-November and the threat of wildfires is still hovering over California. The ground and the air are dry, the winds are high, and it still hasn’t rained. For now, all we can do is hope we find a solution to the wildfires that keep getting worse every year, the voluntary power outages that do nothing, and the unpreparedness of those in charge.

BEFORE YOU GO…

1. Thanks for reading!

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

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful.

A New Kind of Normal

A New Kind of Normal

It’s easy to use the word normal like it’s, well, normal — something typical and expected. But normal can be subjective, too. What’s normal to me might not be normal to someone else.

One thing everyone should agree on, however, is that being chronically ill is not normal. Being too weak to speak is not normal. Being too debilitated to walk is not normal. Being too sick to eat is not normal. Being in chronic pain is not normal.

The worst part is when these things are so constant they become a new kind of normal. They replace the feeling that many healthy people expect to feel tomorrow, the next day, and maybe even for the rest of their lives.

When chronic illness becomes a new kind of normal, it also becomes a cruel existence, one in which pain is a constant torture and exhaustion is as frequent as breathing. This is living with chronic illness at its worst. It makes symptoms feel as regular as the normal feeling that many healthy, trauma-free people have known their entire lives and, in their perceived invulnerability, have come to expect.

I’ve been sick long enough that I sometimes forget how it feels to be healthy, how it feels to not live with pain everyday, how it feels to not get exhausted brushing my teeth, and what it’s like to speak as much as I want, as loud as I want, whenever the hell I want.

Being deprived of basic human functions like this has made it difficult for me to remember what normal was once like — how things used to be, how they’re supposed to be.

But I haven’t forgotten entirely. My memories of how things used to be may not be readily on-demand in my mind — I usually have to dig for them — but they are still there. If I really focus, I can remember what it was like to give a speech in front of a crowded room or talk to a friend for an hour on the phone. I can remember what it felt like to walk around the block. I can even remember how the smooth, cold metal of a barbell felt when I lifted weights in the gym. I can remember lots of normal things — the way my shoes kicked up tiny rocks as I hiked up a mountain, the way the grass smelled when I sprinted across a lawn, the coarse laces under my fingers as I gripped a baseball.

I miss these things. And that’s how I know I haven’t forgotten what normal feels like. Missing these things is the ultimate reminder of what normal used to be like for me; it used to be feeling healthy.

Compared to how I feel now, that normal feeling would be the greatest thing everan extraordinary but simple state of being that, in my current condition, is both a humbling reminder and something to strive for.

There’s no denying that living with chronic illness is a shitty existence, but it’s still an existence, one that can always improve, one that offers hope and the possibility of a better life. That’s what keeps me going.

For now, I have to deal with a new kind of normal, one that is, in many ways, the exact opposite of how I felt when I was healthy. But, no matter how far I drift from that blissfully healthy feeling, I’ll never stop wanting to feel normal again.

BEFORE YOU GO…

1. Thanks for reading!

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

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful. I get about $5 for every shirt sold.

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…