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!

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State of the Body

This is NOT a “political” post… really! It is going to seem like it, and I’m sure there will be people that disagree with my views. This is actually a “call to arms” post! These are things that need to be said and often don’t because people are afraid of political backlash. This is all about being informed and making the best choice for our future.

The title of this post is “State of the Body” because we need to step back and really look at how people with disabilities are treated in the United States. There’s not going to be any change for the better, if we don’t make the conscious decision to set aside our party affiliations and vote for people that will fight for our rights.

This is NOT just about who will be president!

Every office, from Governor to City Council should have a stance on disability rights. It is tasked to us to be aware of their policies! If we are not informed, we will never see change. We will never find the help we need.

Look up your local candidates, see what their platforms are… then search beyond that. If you’re questioning what a particular candidates stance on disability rights is, call their campaign. We don’t pick a doctor based on how they look, we choose based on who will help us the most. So, don’t choose a leader based on whether they’re Republican or Democrat, when a little digging may show you the other will do more for you.

As far as the presidential race is concerned, I will not tell you which candidate to vote for. That is not my place. I would urge you to please do your research! Don’t be afraid to vote for who you believe in and the one that will do the most for your rights.

People with disabilities have been ignored for far too long. I truly hope that the next round of voting will enact some real changes and bring the issues we face into the light.

What should you look for?

  1. Do they even have any policies set aside for people with disabilities?
  2. Do they plan to restrict important medication for people with disabilities?
  3. Are any of their policies going to inhibit people with disabilities?
  4. What plans do they have (if any) to improve the lives of people with disabilities?

There are very likely more questions that can be asked/answered, but these (I have found) are key to making the best choice in a politician.

I honestly hope that this has been helpful. I don’t want to create division, or spark debates. This is a good rule for anyone with something they feel very strongly about.

So please, be informed and vote.

Why do most people think everyone in a wheelchair is paralyzed?

During a recent conversation, it dawned on me that so many people in wheelchairs are capable of walking/standing, but are afraid to because of what other people will say. There has to be a way to bring awareness to this and stop the fear of persecution.

There is this concept among the able-bodied that anyone in a wheelchair is paralyzed, which is incredibly narrow minded. But think about it… have you seen someone in a store using the electric scooters and then stand to get an item off the shelf. How does that make you feel? When you see someone in a handicapped spot (even with a placard) walk into the store, do you automatically think they’re faking or using a tag that doesn’t belong to them? Think hard, we’ve ALL done it at one point in our lives.

The truth is that people with invisible illness often need assistance, but not necessarily every day. That person you see walking in to the grocery store could very well have been completely unable to walk the day before. That person using the scooter, most likely is having a bad pain day and wouldn’t be able to get their errands done if it weren’t for the help. Often reaching for something off a high shelf can be just as painful as walking around the store, so standing to get it is the better option.

Yet… we shy away from it because of all the judgemental stares. We will park without our tag, just to keep people from being cruel. Bullies come in many forms.

Then there are those of us that use a wheelchair on a regular basis, but are NOT paralyzed. We can stand if needed and sometimes sitting all day is just as bad for us as walking. We may have to get up just to stretch, but that’s not what people see, so we confine ourselves to the chair and pray for comfort. That fear is brutal!

Personally, I use a wheelchair any time I would have to stand our walk for a long time. If I don’t, my knees and hips give out and I’m considered a fall risk. So I have to use the scooters at stores, especially if I need several items. Otherwise my pain will be too much, even with my cane. My manual chair is not as helpful in stores, so the scooter is the best option. I’ve started using my cane to get in to the store and keep it with me on the scooter. This is no easy task! But it is a visual for people that I really do need mobility assistance.

What NEEDS to happen is an awakening of understanding to the struggle of people with invisible illness! We need to dispel the myth that everyone in a wheelchair is paralyzed. Yes, some are… but many are not! To judge someone without knowing their circumstances is plain and simple bullying. It is ableism and needs to stop (even among those with disabilities). It is not our place to judge.

(On a side-note. If you’re not disabled and take up a handicapped spot just because the lot is too full, or you just don’t feel like walking that far… stop it! Seriously, leave those spots for people with disabilities. Even if you’re just running in somewhere “really quick”, that’s not a good excuse. You never know when someone with a real need will drive up.)

So, don’t be afraid to be yourself. Stand to get what you need, stand to stretch, and most importantly stand up for your right to stand.

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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