Yeah, 22

Middle turns 22 today. It’s the second year he hasn’t been home for me to do the traditional birthday celebration. Sending a cake would be very messy. Convincing his roommate to string up balloons and banners would be hard. So a box of goodies went in the mail.

I want to say how proud I am of Middle. He is working in a small field of study. No easy routes to success. Hard work followed by more hard work. It’s funny when we try to talk about what he’s doing since the topic is so far outside of my understanding. He still laughs at my attempts to understand. A good thing, I guess.

Today I hope he looks back and sees how far he’s come. I hope he hears all of us cheering him on. It’s not been an easy or perfect path, but it is his path. And I’m really proud of him.

Social Cues

I think we all struggle with this. The situations are never cut and dried, so a template is useless. But we can learn from each other. We can learn through experience. It may not be fun, but it is possible.

I find that reading body language gives me mixed results. Is someone mad at me or restless when they have their arms crossed? Are they laughing with me or at me? Did it suddenly go quiet? Was it something I said or did?

Here’s what I have learned. Stop thinking YOU did something. It sets off a negative cycle that can end up in a really awkward place. Instead, move the conversation forward or excuse yourself (oh, hey, I see Frank over there!). Don’t dwell on it. There’s plenty of time while you are trying to fall asleep.

 

 

Erased

Something happened today. It wasn’t earth-shattering. But it did help me understand more of the current conversation around having disabilities “erased” by the media and society.

I was in a public location. I found the two-stall restroom…one for disabled individuals, one for non-disabled  individuals. Both were occupied and one person was in line in front of me.

I had my service dog with me. I was toting my backpack with my IV medication in it. The people in the bathroom had just come from a meeting we were all attending.

The disabled stall became available. The person in line in front of me took it, leaving me the other stall. The one that wouldn’t fit both my service dog and me. One that I had to put my backpack in my lap just to use the toilet.

I put my dog into a stay just outside the stall. The non-disabled individual started talking loudly about the dog being loose in the bathroom. All I’m trying to do is take care of business.

Later, in the meeting room, our eyes met. There was no apology. Just a sort of condemnation in her eyes.

She could have waited the 20 seconds and taken the other stall. I guess I could have waited the two minutes to use the disabled stall. But….I really feel she should have been the one waiting. Courtesy. Giving the disabled person the space to take care of business would have been the right thing to do.

For those who take the time to read this, and don’t “need” to use the disabled stall, please consider who else may be waiting. Sure, everyone would like the stalls to be larger. Some of us NEED the larger stalls. Be courteous. Thank you.

The Naughty Porcupine

Editor’s note: This is a true story. No allegory intended.

Youngest took a summer internship at our local zoo. It’s been two weeks and every day we learn more about the animals she is responsible for supervising. Today, even though giraffes and lions are her assigned area, she was helping out in the American porcupine exhibit.

One of the porcupines (there are 2) recently had surgery and is on “vet watch.” This entails a keeper having eyes on the porcupine all day long. It turns out that this particular porcupine likes to stick his paws in crevices.  And he gets stuck…alot. Her job was to get him unstuck.

The porcupine also enjoys climbing trees like a sloth instead of like a porcupine. He gets stuck about three feet off the ground. The keeper is supposed to go tap on his claws to remind him to move. Hold that thought….

As Youngest is sitting in the rain, making sure the porcupine doesn’t get stuck, a zoo patron comments to his young son about  the “intern in the wild.” Youngest wears a shirt that boldly states “INTERN” across the back. Another patron comes by and asks her if she’s worried about “being shot” by quills. Youngest, in her nicest voice, informs the patron that according to the information sign RIGHT THERE, porcupines do not actually shoot quills. Besides, she has heavy-duty work gloves just in case she has to handle the porcupine.

As youngest relates this story, she keeps referring to the porcupine as “naughty.” Hence, the naughty porcupine. Ah, the joys of the animal kingdom.

23

Stressed out, running late, racing down the interstate
Spilled hot coffee, down the front of my jeans
It’s work, work, pay the rent, money and my time’s spent
Not a minute left for me to be me~ Kenny Chesney, Live a Little

Today, Eldest turns 23. Three months ago, she left home for a job. We expected this since becoming employed is the end goal of attending college. Still, it’s a bit quiet around here.

Now she’s building her own life in a little town in the middle of nowhere USA. She works the late shift, comes home, sleeps, trains her dog, and does it over again. In between there are grocery runs and a few other errands. She’s active on social media and is working on keeping her language skills up in hopes of landing a better job. And she reads. Lots.

Today I hope she will be able to take a few minutes for herself. Just do nothing. I’m not sure the dog will cooperate, so he may need to be included. Take a small piece of time and just breathe. Think about how much you’ve done and not worry about how much is left to do. Be proud of everything you’ve accomplished. Try not to get wrapped up in things so you can’t enjoy those few moments.

Bask. Yes, bask. Ten years ago you were getting ready to start high school. Blink and here you are. Twenty-three years ago you didn’t even know your name. It sure goes fast when you look at how time moves. I love every minute of being your Mom.

Here’s to you. To new adventures. To taking a moment to be amazed by yourself. To savor all that has passed. To dream about what is to come. To take a few minutes away from rushing around and just breathe.

And then, eat chocolate. Love you!

I’m Not Blue

I’m not blue. I’m Autistic. I’m not a puzzle piece. I’m a person. You won’t find me supporting A$….ever. Why? Because I’m not a disease to be cured. I’m not a voice to be silenced. I see the world a bit differently. And that is just fine. Why are you hearing my voice now? Because too many people think they are helping Autistics by supporting a charity that despises Autistics.

Give locally to programs that support families. Do your research. Is your money really going to do what you expect? Or did you just help pay for someone to present a “speech” about an epidemic that doesn’t exist. I’ve seen parts of the organization’s budget where they spend more money on catering than they do on helping Autistics. Yep, you just paid for a sandwich. Feels good, right?

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

Too abled

Well, the day has come again. People in several disability communities I’m part of on a social media site have started discussing what does disabled mean. It’s not the first time. I wrote about this here: The Disability Card and here: Orphan Zebra.

Today is different. Maybe it’s because I’ve had several heart to hearts with my care team recently. Those complicated discussions where the doctors try to convince me that when I push myself, I only make myself sicker while I argue that pushing myself is what is expected as I’m not disabled. Then the doc runs through all the things they are providing support for me. I guess the day is finally here.

People look at me and don’t see disabled. I work very hard to be non-disabled, so on the days people see me “normal” they have no idea what it took to get there. Of course, I only leave the house 4-5 days a week because the rest of the time I’m trying to get “better” enough to look normal. It’s a daily decision on whether I’ll make it out of the house.

I think the hardest part is I’m still of working age and have the education to be employed. I should be working, or so I feel. I’m just not sure there are any employers who understand why I have so many doctor appointments. Or why I’m dragging at work. Or how can I be sick….again. I’ve worked for employers who can’t see past disabilities whether they be temporary like the flu or permanent like mine. There is discrimination, both subtle and outright. The last few jobs I interviewed for, I was asked about my disability in a very roundabout fashion. Oh, they are careful not to ask outright and I do my best to answer truthfully without shooting myself in the foot. But, I can’t help but wonder if I’m not getting the job after the interviews because of disability. What if I’m equally qualified as a non-disabled person? Who would you choose?

So today at an appointment, my insulin pump fell out of my pocket. I now have quieter infusion pumps in the backpack, but you can still see the IV line running under my shirt. My service dog alerted during the appointment. I lost my train of thought because I was dealing with the alert. Fortunately, this was not an interview. It’s really hard to overlook these things.

So, to the guy who told me I was using a handicapped spot I didn’t need; the person who exclaims “you don’t look disabled!” and the surprised looks I get when my service dog comes out from under the table….leave me alone. You have just walked in on chapter 47 of my life. You don’t know how I got here or what my future holds.

To those online personalities who try to define disability, just stop. Disability is individual. In some cases, one aspect of a life is affected. In others, it is multiple aspects. It’s not a contest. It’s not a game. It’s life and all I want is to live it the best way I can.

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