Yes, I Can

I have a certain level of disability. You can only see a very small portion of everything I have going on. I’m one of the people in possession of a handicapped parking permit, yet you can’t see why. Yes, I’ve had people tell me off for not being disabled. Yes, I usually ignore them. It’s just easier to walk on.

So, yes, I can. I can walk….just not very fast or far. I can work….just not more than about four hours a day. I can take care of my basic care needs. But, I require assistance with my medical needs. Sometimes, I need help with my Autism needs. Yes, I can.

When medical professionals determine “I can’t” without talking with me, it is frustrating. I need information presented orally and in writing. It’s really not that big of a deal, is it? I’m sure I am not the only person who learns better when the information isn’t just spoken to them. But, some people take that as “I can’t.”

Don’t assume my needs based upon your experience. No two people are the same. I am different because of my neurology. I am not less.

Six Years

I have an anniversary coming up. It’s not a happy one that I celebrate. It’s a sober reminder of how much my life has changed. Six years ago, I fell ill with an unknown disease. I missed a long anticipated family trip because I was hospitalized. I had three surgeries within 3 weeks. I spent weeks in the hospital with no one knowing what was wrong. I learned what a central line was and that it sucked.

I discovered that doctors can be clueless. Pre-2010, I thought they knew a lot. By 2011, I knew they didn’t. As I steadily declined, there were fewer and fewer attempts to figure things out. By 2013, I had lost 140 pounds and was unable to eat. A flaw in contracting made it possible for me to be seen at another hospital. So, I lived 14 hours away from my family for 6 months while the doctors figured it out.

And they sort of did. Lots of different things were discussed. I’m just now realizing how easily fixated doctors become when they see certain words. Words that indicate something might be fixable. It turns out, doctors don’t like unknowns.

I’m finding out that the less a doctor knows about something, the more they avoid it. I’m in a status quo relationship with my doctors right now. Hey, I’m still alive. It’s okay to let things go because I’m stable. No need to try to figure this out because, well, it won’t change anything, will it?

But, what if? What if just one doctor decided to look deeper and try to figure out what really went wrong and whether it could be fixed? Would I regain some freedom? Not have to carry a bag of fluids all the time? Be able to do things beyond walking? Eat a salad again (yeah, you never know what you’ll miss until it’s gone)? Not worry about how much I will “pay” for enjoying a meal out with friends? That’s a lot of what ifs.

Six years. I no longer have paid employment. I’m not sure anyone would hire me because of the bag of fluids on my back and the service dog by my side. I struggle with feeling helpless. With feeling useless. I should be doing something, right.

Well, maybe one day. Maybe one day I can be fixed. I can ditch the pumps and medications. I could go horseback riding. I could take a Zumba class (that may be a stretch anyway). I could go out to a movie and eat popcorn. I could live without medication alarms. I could go back to teaching. Flitting dreams right now.

You always hear people telling you to live each day to the fullest because you never know what life will bring. I encourage you to do so. Get out and be passionate. The laundry will still be there tomorrow. Take time to enjoy what you love doing. Slow down and savor your food. For that matter, savor everything.

Live. Love. Laugh.

I Don’t Matter

Last night on social media, someone posted about how dogs have rights like people and should be allowed to go anyplace people go. In context, this started out as a discussion on small dogs carried in purses. Within 15 minutes, it had blown up into a hate fueled rant against service dogs. In particular, one person stated that their dog’s happiness was more important than a human life.

I’m all about pets. I think they serve a great purpose for anyone who desires companionship. Fish are very relaxing for me to watch. I’m not a fan of cats, but that has a lot to do with violent allergies. Hedgehogs….adorable! Reptiles, well, not so much. You get the idea.

This social media exchange left me feeling dismissed. I rely on a service dog to alert to potentially life threatening events. My dog is trained and has been working about 5 years now. She alerts between 5 and 10 times per day, long before I notice I’m not quite well. She does not have rights any more than another animal. The legality of her being with me in public comes from a federal law that essentially declares her to be medical equipment, no different from a wheelchair. Her “rights” come from my rights as a disabled person.

But, beyond all that I’m left with this feeling. Your dog’s happiness is more important than my life. As we just passed the Global Day of Mourning for people murdered by their carers, it really struck home. No, I don’t know any of the people who attacked on social media last night. However, the sentiment that my life is disposable came through in many comments. I was personally attacked for “claiming” to be disabled. I was told that disability means I’m just to stupid to do anything. Disability means I’m lazy. Disability means I’m “playing a card.” Disability means I don’t matter.

I asked myself if I extrapolated the numbers from the negative comments last night, do that many people share the idea that people with disabilities have no purpose? Following that….with this kind of prevalence, no wonder most people aren’t outraged at the murders of disabled people. We don’t matter.

We don’t matter. Wow. Non-disabled people put their needs, wants and desires ahead of disabled people’s basic rights. There it is in a nutshell. Several of my friends have told me their stories about how the people they identify with don’t matter. I think it has finally sunk in just how horrible not mattering feels.

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.~

Martin Niemoller

Ableism

I’m hearing this term a lot. It seems to mean that a social prejudice exists against disabled people. I’ll buy that. It’s been going on as long as there have been people. I guess it is just now becoming a cause to rally around.

Sure, we should treat all people equally. Wouldn’t that be great? <sounds of John Lennon’s Imagine in background> I’d love it if every time I spoke up about something I didn’t get thrashed to the ground. Seriously, because of my perceived ethnicity and socio-economic status, I am frequently accused of speaking from a place of privilege. Nope, didn’t win a piece of that last Lotto people. Yep, I’m middle class as others define it. I’ll even admit to being a white female as many seem to take umbrage at that too.

I get it. I haven’t LIVED “it” and therefore know nothing about “it.” Well, I’ve lived with disability. So, being able-bodied is the norm and anything else is disabled. I’m not normal because not everything works quite the same way as it does for others. I use elevators, ramps and escalators instead of stairs. I don’t sign up for 5K runs. I spend more time with doctors. I think I glow in the dark. I know I can’t do some things and probably won’t ever do them again.

But, my tribe has not sent me into the forest to die. They actually fight quite efficiently with the doctors who wish I would do that. Speaking of doctors, aren’t they just the very definition of ableists? I mean, they compare you to all their charts and graphs of normal and sit in judgment on why you aren’t. They try to fix you so you can be normal again.

But what if you were never normal according to those charts. Why does everyone spend so much time trying to fix things that may not be broken. Because they can’t accept that “not normal” may be as okay as it gets. I think that’s the heart of the ableism issue. Why are we trying to fix what isn’t necessarily broken?

I read a blog today about a permanently disabled wheelchair using bumping into two temporarily disabled wheelchair users on a bus. The temporary users where complaining about stairs and such and stating they couldn’t wait until they could walk again. They were visiting the land of disability.

I’m not visiting. I’m not a tourist. I’m not even lost. This is my normal. This is what being disabled feels like to me. You won’t hear my voice screaming to be accepted as normal, for I am happy with what I’ve got. I feel the discrimination. I understand wanting to be accepted for who I am. That would be awesome. However, for now, I will just wish that my doctors learn how disheartening ableism is for me. And be thankful that my tribe doesn’t feel the need to send me into the forest.

Job Interview

Dear Hiring Committee:

I made it through the screening process. You only know what I put on paper so far. Now we meet for the first time. You seem like an affable group. Smiles and handshakes all around. Then, “What’s your dog’s name?” A harmless question, really. But you noticed I use a service dog. You seem okay with it as she settles at my feet ignoring everyone.

The interview goes well. We have a sheet of prepared questions, ten in all including the ultimate “Do you have any questions for us?” I answer them easily, gauging your interest by the notes you take, or don’t take. I see you watching me and hope it’s because you’re hanging off my every word and not wondering what’s so wrong with me that I have a service dog.

Oops. I “forgot” to mention I’m Autistic. I can pass off as NT pretty well. I’ve been doing it most of my life. You don’t seem to pick up on any of my stims (yes, I rub the skin between thumb and finger when I’m nervous) or the bit of rigidity that sometimes shines through in my answers. I choose not to disclose because I’m afraid it will bias you. I’m afraid you will only see my Autism and not all the experience and qualifications I bring to the table. I’m afraid you will judge me not worthy to work because you are not familiar with people like me. Whew, made it through the interview!

Oh wait. I “forgot” to attach myself to the bag of IV fluids I run all day using a pump. It’s a bit obvious, you see. It makes me look fragile. The pump’s clicking noise is like an adding machine. Ka-clunk. Ka-clunk. Ka-clunk. Every 8 seconds. In a quiet room, you can hear the pump doing it’s job. I don’t want you to be distracted from ME. I’m the focus here. Can I do the job? YES, I can. Do you need to worry about my pump? No. I can handle it. The fluids make it possible for me to ask for this job. You see, they keep me out of the hospital.

It’s kind of funny that the job is with Disability Services and I’m afraid to disclose my disabilities because they might disqualify me. That’s how strongly I sense the stigma of being disabled. Sure, this will all come out if you hire me. I’ll deal with that when it happens. At least I know you hired me for ME and not out of some misguided sense of filling an EEO place. Yep, we’ll have to work around appointments, perhaps more so than an “average” employee but not so much that I can’t do the job.

There you have it. You didn’t ask and I didn’t tell. There’s a certain beauty to this dance. We both have to take risks and hope the payout is worth it. I’m sure you didn’t disclose everything about the job. I quite sure you didn’t tell me about the personalities I will have to “fit in” with in this position. So, I don’t feel bad about leaving out a few things that really don’t impact how well I can do the job. That’s what this whole process is about, right? Finding the most qualified candidate to do the job.

Sincerely,

Oysters and Life

 

How to be a jerk

Unfortunately, I know a few people who don’t need to read this. They have perfected the art form. Maybe they don’t realize it, but if for some reason you find your head bobbing along as you read this, pay attention.

As an Autistic, I have a very keen sense of sarcasm. Yes, I do mean to be sarcastic because I really can’t stand some of the things people do. However, sometimes it not read as sarcastic and then I have some ‘splainin to do. Sometimes I speak directly to the point and it’s seen as sarcasm. Again, explain it and move on. But some people are just au naturel jerks.

Let’s start with what should be obvious. Someone does something for you, in a good way, you say thank you. Walking through a door and dropping it into the next person’s face is being a jerk. Being part of a conversation and not allowing anyone else to speak, you are being a jerk. Insisting your way is the only way, you are being a jerk. Pushing people around because “you can” makes you a jerk.

Using people for your gain, as in accepting gifts and not saying thank you, makes you a jerk. Using said gift to hurt the gifter makes you a jerk. Telling people to butt out because you have no room in your life for advice makes you a jerk. Not making room for the people you consider friends makes you a jerk.

Speaking rudely about other people to your friends makes you a jerk. Lying to people makes you a jerk. Taking advantage of people makes you a jerk. Trashing someone on social media makes you a jerk.

I think you have the idea. If you would want someone to do any of the above to you, then you need to reexamine you state in life. There is no reason for you to accept someone in your life who is a continuous jerk. We all make mistakes and I feel those should be forgiven. However, a pathological jerk just needs to leave you alone.

What can you do to resolve any tendencies toward being a jerk that you may exhibit? Start with the opposite of the above example. Try the “do unto others as you would have then do unto you” philosophy. Think about your behavior. Is it kind? Would want to hear the same thing? Is it productive? I won’t go into truthful because that’s subjective, but the truth can be said in ways that don’t paint you as a jerk.

Your challenge: Distance yourself from people who insist upon being jerks. They thrive off your reactions, so don’t give them any. Work to improve your own behavior so you become a better person and can withstand the occasional jerk. Evaluate your friends and if you want to keep them, tell them when they are being jerks. Otherwise, send them on their way.

Together, we can make things better. Maybe stop a bully or two along the way. It’s definitely worth the shot.

Judge Not

For every action, there is an equal and opposite reaction.~ Sir Isaac Newton’s Third Law of Physics

Being who I am is complicated. If you nudge on part of me, something else shifts. Medically, this drives my doctors nuts because things happen that shouldn’t happen. Mentally, this is incredibly taxing. Trying to keep my ship on an even keel is a whole lot of work.

It’s not all done by me though. My family, especially my spouse, are fabulous. During my recent illness, I was in the land of “not fun” for about a week. It was really not fun for my spouse.

I’m starting to somewhat understand the talking heads that want to empathize with caregivers when they snap. In the last few days, I’ve found out that caring for me when I’m not well is hard. One friend said it was weird seeing me act mentally ill. Yes, that was an educational opportunity right there. The point is, I’m starting to “get it.”

That does not mean I condone the actions of those who snap and take it out on their charges. As I don’t remember about a week of my illness, I think I can safely speak for the people who rely on others to care for them, even when it’s really hard. There is pain and regret that I am so “hard” to care for sometimes. I feel remorse for putting my spouse through “hell.” I don’t remember the specific incidents, but I can hear the pain in people’s voices as they gently try to fill in the blanks for me.

Now imagine a person who can’t communicate as I am able. I feel all those things and can’t express them. Those are very powerful feelings to keep bottled up. So when I act up, I’m not trying to be difficult. I just don’t have any other way of letting you know what’s going on with me.

Empathizing with people and feeling compassion towards others are good things. They keep us human. Those qualities and the actions spurred within you balance out the people who don’t share those qualities and make life that much more difficult for others. Just don’t move into apologizing for others. It’s not your job.

The recent murders/attempted murders of disabled children were choices made by their caregivers. They were choices. The caregivers must now face the equal and opposite reaction of their behavior. We cannot define what those caregivers should feel. We cannot judge those caregivers. We can hold them accountable for their actions. And that is what keeps us as a society in balance.