Resisting The Inner “Angry Cripple”

I’ve been something of a “fan girl” of Maysoon Zayid’s since watching her TED Talk earlier this year, so you can just imagine how surprised I was when I noticed she noticed one of my tweets & then replied to a DM (or 10).

One of her DMs has stuck with me, “Say no to angry cripple face.”

Typically the word “cripple” sits on my last nerve longer and harder than “the r-word” ever could. This time was different, yes it was coming from one of my peers (which always helps), I realized she’s onto something.

I think most (if not all) individuals with a disability have “an inner angry cripple,” like people have an inner child; however some people are better at controlling (or resisting) their “inner angry cripple” than others.

I, myself have an inner angry cripple, who I often have to keep at bay; especially when various news items end up in my eye line that I happen to disagree with, and disagree with more than a little bit.

There’s a picture floating around the interwebs that says, “I’m Italian I don’t have an inside voice.”

An uncontrolled “inner cripple” is the same way. It won’t shut up, unless you shut it up.

I’m not sure when it starts for people. All I can tell you is that I have no idea when it started for me, but I have a feeling that it’s just getting started. Something tells me it starts around the time you get shoved around one too many times and no one else seems to give a crap.

There seems to be an ongoing conversation within the disability community of “how much is too much.”

This same question applies to advocacy and activism.

How much is too much?

I’m learning that the saying, “he who screams loudest wins” isn’t the best route (no matter what the “inner angry cripple” says). There are times when it is called for and it can be very effective but it’s hardly a long term plan for successful advocacy.

One of the most frustrating things about the disability community is that we’re painted with a broad brush by “outsiders.” If someone has a negative interaction with someone with a disability then the first someone will often carry that over to the next person with a disability that they meet, even though it’s two separate anything and everything.

What I say has an effect on the next person. What someone said before will affect me.

It makes no sense and a lot of sense all at once.

It’s not fair, but it’s reality.

For this reason my biggest obstacle in having an impact is myself and my “inner angry cripple.”

I’d venture to guess it’s the same for a lot of people.

The “inner angry cripple” has its place in my head (and any advocates). It’s the engine that drives the train. However resisting the “inner angry cripple” and its first instincts are important.

Yelling at every person whose done wrong may feel good, at first, but it won’t really make the same impact as a sane rational discussion will.

I will resist my “inner angry cripple” and her urge to jump out and play at every available opportunity.

Do you resist yours? If you don’t, will you try?

 

On Dignity & Disability

I’ve been told that it’s a good idea to set up internet alerts to keep up with the news that may interest me. While I think it’s a good idea and I have come close to doing so on more than one occasion, I’m glad I don’t have any of it. There are plenty of days when I want to pull the plug and throw my computer out without additional influence. Can you image what would happen if articles ended up in my inbox the second they were published? No thanks.

Over the last few weeks there have been a few articles that have grasped my attention and just won’t let go (and raised my blood pressure exponentially).

Please note (and respect) that I will not be linking directly to or mentioning any specific details of these articles. I’m choosing to use my “linking power” wisely.

I’m not expert on dignity but it’s been a recurring topic in my continuous inner dialogue lately. What is it? How does one achieve it? How should you go about protecting it? I think you get the idea.

The issues surrounding dignity or lack thereof and disability are really starting to get to me. I’m not the most diplomatic person (read: at all) & I have a temper so my first reaction is usually anger and it takes me a little time to get my thoughts out so someone else can know what I’m trying to say and want to listen.

Dignity in regards to disability is not a new frontier. However it is one that needs exploration by the able-bodied (and those related in any way to someone with a disability). It can be a tricky subject to approach in mixed (ability) company; it probably has something to do with sympathy vs empathy, or other similar topic.

I remember the first article I read that made me question how people saw dignity for people with disabilities. It made me so angry I just sat on my feelings for a while, because I wasn’t “into” being a disability advocate then so throwing my feelings out there would’ve been shocking to everyone. I kept my feeling to myself, mostly, but it’s never left my mind.

I’m pro a lot of things but I draw the line somewhere before preforming medical procedures to stop individuals from growing up, literally, because someone going through puberty and adulthood are more difficult to care for.

It’s a fact of life, disability or no disability. There shouldn’t be a separate set of rules for those with disabilities. That’s the exact opposite of what so many people fight for.

If the same thing were to happen to an able-bodied person masses of people would be up in arms and it wouldn’t even make it in front of an ethics board, never mind be approved by an ethics board.

Let’s not even discuss what would happen if a child were to ask to stay child-sized forever, because I think we can all guess what would happen.

One area I tend to struggle with my thoughts the most is in an educational setting. I’d like inclusion for all, of course, but there are situations when I wonder if it’s really possible. I’m against self-contained classrooms mostly but I’m not completely against them. If you want to reinvent the mold for your child to fit into the mold that’s fine, but not at the expense of other children, that’s not OK. A child needs to be given the best environment to flourish in the long term.

Creating a short term solution and hoping that it “just might” evolve into a long term plan is not only irresponsible but further proving the long held myth that people with disabilities are handed opportunities because they can’t afford them for themselves.

Let’s not forget about a certain photo controversy that’s become a virtual powder keg of opinions.

To be clear the differences of opinion are with the photo. I haven’t read a single comment from someone with a disability who has a favorable opinion of the photo. At the same time the majority of positive opinions have come from parents (or caregivers etc.) of a child with a disability. While both groups (PwD & parents, etc. of PwD) are part of the disability community each comes to the community with a different point of view.

I will not be talking about the point of view of parents, etc. because I am not a parent and I am not close enough to “the etc.” to be able to speak on it effectively.

Speaking as a person with a disability I can tell you that the photo was an immediate turn off. I’ll often read articles even if the photos turn me off the subject. I’m a visual person so I understand the value of a well-placed visual, whether positive or negative. Sometimes I have to “override” first instinct and give something a chance. However using this particular photo was foul play on the part of journalists and parents.

Just because you’re OK with complete access (and/or are given it) doesn’t mean it’s OK to take advantage of it.

How many pictures have sparked controversy because a parent posted it online? Pictures of able-bodied minors in a diaper or even a questionable outfit are posted every day and someone somewhere always had an unfavorable opinion of it. And if the backlash is big enough social media accounts are suspended.

Why isn’t the same curtesy extended to an older individual who cannot speak for themselves just because a relative or caregiver gives the OK?

And what would happen if someone who could speak for themselves is perfectly fine giving a journalist full access and a similar photo was used? I doubt people would have a similar reaction. In fact I doubt a photographer would even take such a picture.

I’m going to take it one step further (maybe a step too far even). Child predators toll the internet 24/7 looking for images of people, most of them are seemingly innocent images.

People get upset and “cry porn” if a mom posts a picture of a three year old proudly wearing her “big girl underwear.” Yet it’s a “beautiful image” to see a disabled 16 year old wearing nothing but a diaper.

Isn’t this a double standard?

I could probably go on and on with more examples, in fact I know I could, but I’ve said enough, for now.

A friend said things better than I ever could, “because disability is involved, we accept the notion that disability means less-than-human. We must remember that a person is a person, no matter their abilities. Everyone deserves to be presented to the world around us in a manner of dignity and respect.”(source)

 

Riding In Cars

My mom bought a new car recently. I, being the good child, went shopping with her; basically I helped her avoid saying, “I shouldn’t have gotten red,” or “this interior is too light, don’t you think,” in 6-9 months.

It’s been a while since I’ve been in a car dealership so I’ve forgotten just how much I don’t like an overabundance of “new car smell,” or overeager salesmen.

Selecting a new car can be easy and complicated at the same time.

Knowing what you need is easy. Getting it all in one car with minimal extra costs is where things can get complicated. Thank God for the ability to find almost anything online before you even have to consider going to a dealership.

I highly recommend browsing online before going to a dealership, especially if you don’t like spending a lot of time shopping under the eye of overeager sales people. Our visit to the dealership was fairly quick and it still lasted most of the day.

I want to be sure to tell you that I did actually like the salesperson that helped my mom. My objections lie in the process of car selection and purchase.

I also want to be sure to tell you this is the first time I’ve browsed for a vehicle from the point of view of a person with a disability (without the benefit of being at an Abilities Expo). It probably sounds like an odd concept considering I’ve been living with a disability for 3 decades but it’s true. I managed to even shock myself with that one.

We went for a test drive fairly quickly, it was basically a formality since my mother liked her old car but it was pretty old in terms of age and mileage. She just needed an update (or she determined after some at home research). However the inside was completely redesigned recently so there was more looking from my point of view then I anticipated.

They brought an available car around for a test drive & I immediately started looking for little details. The height of the back of the car. How high the rear gate opened. How high was the car from the ground. I wasn’t thinking in terms of actual measurements, because honestly my mobility isn’t that technical but it needs to be considered anyway.

I did have trouble getting into the car at first but I think it’s due to the fact that I usually sit in on the passenger side, even if I’m in the back seat, instead of behind the driver. It wouldn’t have been a big deal except I aggravated my shoulder, which took quite a beating during my school-cation last month.

While the salesperson was going over the inside features of the car I took a look at the available cargo space. If my wheelchair can’t fit into a car with other essentials it’s an automatic deal breaker. You’d be amazed at how many bigger sized vehicles how inadequate space for assistive devices.

After the test drive my mom and I both wondered out loud (but outside the earshot of sales people) if I should’ve brought my wheelchair. Honestly if I had to do the whole thing over again I would have. If nothing else it would’ve given me the availability to see things for myself without the typical sales pitch (hopefully). Water bottle storage is great but it’s not something I think about before whether or not there’s storage and access to my chair (for example).

The salesperson seemed pretty intent on making sure I understood that buying a car is considered to be the 2nd biggest purchase in a person’s life (so I’m assuming buying a home takes the #1 spot?).

I resisted the urge (more than once) to tell him that I recently ordered a new wheelchair & that I’m putting myself through grad school, and both cost more than the car my mother was about to purchase, individually. I’ve made my air share of “biggest purchases” in one year, never mind a lifetime.

I realize it would be a little unrealistic for the sales industry to change their sales models, if it works for you why change it. However a little fine tuning to better serve the consumer would go a long way. Not once were we asked, “What do you need out of a vehicle?” That would’ve made the whole process a lot less painful.

In the end I’m more thankful than ever that I don’t drive.

On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA or just want to test yourself feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

Friends & Big Heads

Not to be confused with friends with big heads, although I have a few of those too.

Being a speaker (and in a sense an advocate) is an odd thing. Granted I’m still somewhat new to “the circuit” (or whatever) so maybe it’ll get less odd over time.

Here’s why it’s odd, at least for me at this point in time. You (the speaker) tend to work with one person (the contact). But you speak to a mass of people and it’s highly unlikely that your contact has detailed demographics on even a fraction of your actual audience.

I’ve also discovered that there can be a difference between your intended audience and your actual audience; another fun aspect one must deal with.

When I made the decision to pursue speaking full time, I joked with my closest friends that I should probably create an advisory board for myself; people who will listen to or read my work and give me feedback before presenting it to the masses, and more importantly call me out on my crap whenever necessary.

One of the challenges of the CP community is that the bar which people are judged is rather low. I think it stems from the myth that there aren’t adults with CP. If you don’t expect someone with CP to be an adult it’s pretty amazing when they go to college, move away from home and hold down a full time job (or multiple jobs), or serve 20+ years in the Navy.

It can be pretty easy to get a big head when people are constantly telling you how amazing you are for one reason or another. That’s why it’s so important to surround yourself with friends and family, to remind you of your expectations rather than what others may deem an “exceptional accomplishment.”

It’s not uncommon for me to tell a friend about a talk I’ve been asked to give. It’s not uncommon for me to ask for their feedback on some of my ideas. It’s also not uncommon to hear, “That’s not great. You’re great, but that’s not what makes you great, that’s average.”

Any chance I had to developing a gigantic ego is pretty much gone after that.

It also doesn’t take long for someone to claim the job of “first reader” once I’m officially booked to talk. Ever call “shotgun!” on a road trip? It’s not much different.

Any danger of thinking I was in this venture all alone is pretty much gone after that.

I went into this venture with expectations that weren’t exactly reasonable, and that’s OK, not to mention somewhat expected. As much as you try to go into something as prepared as possible and with your eyes open there’s always something to learn (or unlearn, whichever the case may be).

I’m so grateful for the support I have while I try to educate (and maybe inspire) others. It’s important for me to keep my head on straight, if I don’t people may get the wrong idea from what I say, and wouldn’t that just defeat the purpose of all of it all?