We may not all be able to march, but we can rally!

As a woman, I participated in the “Day Without a Woman” yesterday (March 8th). I wore red, I took off work, I didn’t go shopping, and I went to lunch at a female owned small business (Mexican). These are things I’m physically capable of doing. I also plan on attending the March for Science in my home state (with the assistance of a friend). But it makes me think… what about us?

Disability Rights have finally started inching its way in to the conversation (about time). My hope is that this trend will continue, and grow in “popularity”.

I hate the word “popular”, because it sounds like civil rights are just cliques that fight for attention. But in reality, civil rights should unite us! They give us a common goal, a focus for change. We are humans that just want to live. That is all, we want to be free to live.

Disabled citizens are especially worried about that freedom.

Parents of children with disabilities are worried for their kid’s future, and rightly so. With the new voucher system, students with disabilities are being pushed aside and will suffer from lack of funding. Even healthy kids are in danger of losing specialty classes that are vital to a well-rounded education. We have a Education Secretary that knows nothing about public schools, and their benefits. But this is not about a single person, this is a much bigger problem, and has to be addressed.

For people like me that rely on insurance on a daily basis, I cannot begin to express my fear for the future. No, the ACA was not perfect. But our new healthcare plan is riddled with flaws! It only benefits people that don’t need treatment on a regular basis. Annual check-ups, the random flu/cold, these are things easily covered. But when you go to the doctor (or multiple different doctors), you might as well forget about saving for anything.

So, what can we do? Form a rally or march of our own? I know I wouldn’t be able to fly out to Washington and march (well, roll) up to the capitol building with a list of grievances. But I think there is something we can do.

If everyone with a disability (of any kind), said “We’re tired of being treated like a burden, we’re tired of Ableism” and spent one whole day doing something to get their attention. It could be sending pictures to our local politicians, it could be wearing the color of our individual condition, or some other form of solidarity.

For those of us that still work, it can be difficult to take a day off (especially for something like this), because we end up using our sick days up pretty quick. But if you tend to hide your disability, this would be the day to make it known. Because of HIIPA, we are under no obligation to do this. So, it could make a big impact. Take video of your “coming out” and post it on-line. People need to start paying attention to the contributions of people with disabilities! We’re not a burden to society, we are society!

July is Disability Pride Month and July 12th is Disability Awareness Day, so I feel this would be the perfect day to rally. If anyone has suggestions on how to make this successful, please comment below! I really hope this gains support. Ableism has become the norm, we need to make a statement that says very clearly “We’re here, and we’re not backing down”.

I’ve made a Facebook page specifically for the July 12th, Disabilities Day.  I hope you take the time to comment or message me with suggestions (note- hate speech will be deleted). Thank you!

What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

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Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

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