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

 

Bully Me 2

Thirteen in the thick of a cornfield
I learned to fight, keep roads tied, and not chill
Never did change, stayed strange, hopped a train
My first chance I got out of Smallville
Life has it’s way of movin’ you on, don’t it?~ Kenny Chesney, Don’t It

My daughter asked me a question a few weeks ago. How did I deal with the bullies in school? Bullying has become a front stage issue. When I was much younger, it was tolerated as long as no blood was shed. Boys will be boys and all even though girls are sometimes much wore bullies.

Truth is, I did learn to fight. Most of the time I used words. Trust me when I tell you that using words is challenging, especially when you have an extensive vocabulary. I fluently spoke three languages…the Queen’s English, American and Sarcasm. Unfortunately, Sarcasm only works if you use words the recipient understands. Otherwise it just goes right past them.

I threw a fair few punches at school. By the time I was in Junior High, the pack of bullies drew immense pleasure from teasing me. My locker was broken into. I was tripped in the classroom. I was shoved to the ground in PE. So, I learned. I learned how to fight back. I shouldn’t have needed to, but the teacher’s didn’t stop the physical threats. So, I got suspended. Before school, in school, after school. I was a regular on the circuit. By eighth grade, we were back to just words.

By high school, I had learned to just avoid the bullies. Head low, mouth shut. Move along and stay invisible. By my junior year, I had checked out. I started attended college and working. Not much time was spent at the actual high school. My senior year I had 3 classes, including two teacher assistant slots.

To answer the question…I dealt with bullies by becoming a bully. Not exactly a proud moment when you realize that. Certainly not the advice I would give my child or anyone else. We are much more aware of bullying and it’s effects than we were thirty years ago.

I did pretty much what the lyrics above talk about. I didn’t grow up in Smallville, but I left when I was 22. I remember it felt good to leave all that behind and start over. And over. And over. In some ways, my nomadic lifestyle was a blessing in that I could look forward to a move and reinventing myself. By the time we settled, I had a much better grasp on things.

Yes, it took me until my early 30s to realize I could be me. So my advice to my kids? Head up, feet forward and keep moving. Soon, the bullies will lose interest. You will learn to focus on the good things around you and the bullies will fade into the background. Does this always work? No. But about 75% of the time you are able to keep moving.

That’s what counts…being able to move forward. Each day will bring fresh challenges. Head up, feet forward and you will meet those challenges. Life is messy. You don’t need to clean up everyone else’s mess. Focus on growing into the best version of you. That’s what I would say today.

Inspiration

Today I met an amazing woman. She’s a foster mom with two of her own kids at home. Yesterday she received a call from social services asking her if should could take a sibling group of 4. With less than an hour’s notice, the children were at her door. As they were being dropped off, the social worked said…by the way the 7-year-old is Autistic.

It turns out that the woman works with a friend of mine. My friend gave her my number and urged her to call me for ways to work with the 7-year-old. The foster mom has no experience with anyone Autistic. Yes, she did call me. We texted over the next five hours as she observed the children. We talked about giving instructions and requesting compliance.

This morning I went to her house to observe the children before we went to the elementary school they will be attending. I had already explained to “mom” the possibilities and what the best placement might look like. As we sat in the conference room with the school staff, mom tried to keep up. The school staff kept speaking “school-ese” and didn’t even notice mom had no idea what they were talking about.

So, I jumped in. As a special education teacher, I was able to help the staff understand some of the unique needs I had already observed. Mom was able to get questions answered in terms she understood. The 7-year-old won’t be able to start school until Monday, mainly because of the many pieces must be in place for him to be safe.

I am really glad this mom reached out. She’s doing something most of us wouldn’t dream of doing….taking in children who have nowhere else to go. She’s going the extra mile to be an anchor for these kids whose lives were turned upside down. And she’s willing to learn more about Autism instead of refusing to take the kids. That is an amazing person.

 

Explain

How can I try to explain, when I do he turns away again.
It’s always been the same, same old story.
From the moment I could talk I was ordered to listen.
Now there’s a way and I know that I have to go away.
I know I have to go.~ Cat Stevens

In the song, the artist is having a conversation between a father and son. Here, I want you to think about the words in a different context. It’s no secret I have multiple medical issues. I recently had a “minor” procedure that, now entering week 3, has wreaked havoc with my life.  Combined with some medication changes, I literally have no life right now.

So what do those words mean? I’m tired of explaining myself. It’s hard enough when I feel well. When I don’t, well, it sucks to have to keep repeating myself. Over and over to different doctors because for some reason, they can’t read notes. They refuse to listen to me. They refuse to listen to each other. It’s like shouting to the vast oceans.

Part of this is my Autism. I just can’t communicate my needs correctly all the time. I assume people know what I need/want and they don’t. They no more know how to read minds than I do. I think they hear me, but they don’t really get what I’m saying. Honestly, I speak fluent English as do  most of my medical providers. Somehow, it seems to come out gibberish.

The worst part is that most doctors don’t seem to hear me. I’m told to listen and not question. Right now, I have refused treatment for one disease because of my doctors. Honestly, it’s frustrating all involved parties. But, I felt I had no choice. There was a lot of demand placed on me with no expectation that they listen. My words fell on deaf ears. So, I refuse. Childish? Absolutely. Effective? Quite possibly since outcomes drive evaluations.

I’ve also been denied treatment in these last few weeks. It seems that my doctors, even the ones who just met me in the ER, know more than I do. I went in for pain…it seems they somehow missed a 3mm kidney stone and are now calling it a fragment. Let’s just say that it’s significant and painful. Did I receive treatment? Not really. My blood sugar decided to go low most likely from the stress. So, they focused on that. They didn’t even check for stones and consequently figured I was just seeking drugs.

You can go in the archives to find more thoughts about seeking. In this case, I just shut down. Doctor’s seemed to be yelling at me. Demanding things. Angry voices. And I, adult and all, just shut down. I have to say, doctors have no idea how to deal with Autism. Yelling doesn’t help. It really never helps. But it’s what they do. So, we go nowhere. I don’t receive treatment, they don’t get answers.

So there is no win/win. It’s all lose/lose. The doctors can’t treat me. I shut down and can’t answer questions. One day, my wish is for compassionate physicians who aren’t “in your face” or “detached” from what they do. .Until then, I guess I’ll just be a petulant child.

 

 

21

Sing, Sing, Sing by Benny Goodman

Middle turns 21 today. He’s into music. I found the perfect song for him….

Twenty-one seems, I don’t know, young. Exuberant. Jubilant. Excited. Snappy. And jazzy.

All the rites of passage of youth are supposed to culminate on this day. I don’t feel that way because there is so much more to life than being able to buy alcohol legally. But, Middle likes to hang out with friends and he’s a tad younger than many Graduate students, so now he can actually go listen to bands at local clubs. I’m sure that is one thing he will like.

Yes, you read that right. I’m really very proud of Middle. He’s moving through college at an advanced pace, set entirely by him. I was told 19 years ago that college wasn’t in Middle’s future.

I hope you’ve read enough of this blog to know that “can’t” “won’t” and “never” aren’t words I use. Middle went further than those pediatricians said he would. He is exceeding the expectations of many along the way who whispered “just give up.” Middle took that as a challenge…genetics and all I guess.

Middle doesn’t like me to talk much about him. I’ll just say that I’m mighty happy he didn’t listen to those who would have denied him opportunity. I’m tickled that he’s making a life for himself. We still talk, but he’s the one steering the ship now.

So, Happy Birthday to one of the most amazing young men I know.