Tuesday, April 25, 2017

The Treadmill

When my power wheelchair last broke down, which it has again, I was visited by an assessor kind of person who has to sign off on my need for a new wheelchair. Foolishly, when my chair was repaired, I rescinded the request and now will have to go through it again and, of course, pay for it again. But when she was there, and when she learned that I was a wall walker, she asked if I had thought about using a walker, she thought that I'd be safer that way. I told her that I didn't think I needed one at this point and we moved on to the rest of her evaluation.

So, we spent the weekend between gigs here in Minneapolis in a hotel that has a small gym. I noticed someone using the treadmill and holding on to it as if it were a giant walker. I got an idea. I told Joe that I would like to try using the treadmill as long as he was there with me, as long as I could step up on it, as long as it didn't go fast and as long as I could grab on to something sturdy that would keep me from falling over. Joe looked a bit fearful at the idea, having been there for a couple of nasty falls in the past, but agreed.

We set out.

The room was empty and I rolled my chair right up beside the walker. I got out and stepped up on it and then we had to figure out the controls. I got off the treadmill and back in the chair as we tried to suss out what all the buttons were for, I didn't want to go flying off and I admit that I didn't want to embarrass myself. Finally we understood how to work it and I got on again.

With great fear we started it up and it went really slowly, just perfect for me. It was sturdily built and I was able to lean down on it hard, holding myself in position as my feet moved below me. It wasn't comfortable and my arms tired more quickly than my legs did, and I have strong arms. But I managed seven whole minutes. Over the weekend I got that up to ten minutes at a slightly quicker pace.

Getting back in my wheelchair felt like the most welcoming thing. I felt stable and in control and the fear of falling was, of course, gone.

I know that the idea of me on a treadmill is comic to some and, oddly, a betrayal to others, but it was just me trying something new, trying something I didn't think I could do. Do I imagine myself one day running on a treadmill? No, of course not, I'm good with that not being in the cards. Do I imagine using it again? Yeah, I do. Why not? I'm a wall walker, I'm simply using an electronic walker.

See the things you get up to when away from home for a weekend. I would never have predicted this, and, my friends, that's what made it fun.

Monday, April 24, 2017

He Didn't Believe Me

I followed them into the store, they, to a one, briefly looked back and saw me. Most dismissed me right away only a couple let their eyes linger and their giggles bubble forth. There were about eight of them. Boys and girls, all in their very early teens and all out for an afternoon in the mall. I had seen the store before I saw them heading there, it's one where I wanted to pick up a gift for a friend, and when I noticed them, I nearly turned around. But, I reminded myself, this is my mall too, this is my space too, it is my right to be here. I think I might shock you if I told you how often I have to remind myself of those simple facts.

Once in the store I saw that there was a mom there with a boy, maybe 8, with an intellectual disability. He saw the other kids come into the store and made a bee line for the back of the store. His mother called to him, and called to him, and called to him to come to the cash register and pay for his purchase. I'm sure that she heard the kids chatting amongst themselves loudly about 'special needs' and though they didn't say the 'r word' they communicated their view of him as other and as different and as less.

In their chat, they mentioned having been dropped off at the mall after church. I would not normally mention this however if you are going to be loud about your church attendance then you need to realize that you have chosen to represent your faith and your god, their casual and nearly joyful cruelty was terrible to see.

Mom wanted out of the store, her son didn't want to leave the back of the store. Joe comes in at this point and I have an opportunity to do something. I could see that mom didn't want a scene, she didn't want to confront the kids, she just wanted to make the purchase and get the hell out of the store. It had become toxic at the entry of the freshly churched children.

I rolled over by them and began telling Joe, loud enough for them to hear, what was going on. That these kids were mocking a disabled boy and, of course, me too, by how they spoke about disability with such disrespect. They heard me. I thought they'd care. They didn't. I had thought that I could shame them. I couldn't. They didn't care what someone like me said, what someone like me thought.

They also didn't stop. They began, under their breath, mimicking mom's desperate plea for her son to come to the cash register. I rolled over by him and then rolled back towards where his mother stood. He followed me, head down, like he was hiding behind me. There are times I am so freaking thankful to be tall and fat and in a wheelchair. This was one of those times.

Item is bought, mom and son are gone.

I'm in line with my purchase behind these kids. The clerk serves them and then wishes them a good day. I didn't understand why the clerk hadn't done something, he's the one in charge of the space, he's the one with the obvious power. So, I asked. I asked him if he'd heard the kids making fun of the young boy with Down Syndrome. He said that he had. He said that it disgusted him and that behaviour like that makes him want to vomit.

There was a truth and a vehemence in his words that surprised me.  He went on to say that he was in the special needs class in his school for many years, he told me of his own diagnosis and a bit of his journey. He said that he got teased daily, but that it wasn't at all like his classmates got. He said that when it happens in the store he just freezes, like he's 11 again, and alone and not knowing what to do. I immediately felt sorry for having, in my mind judged him for his inaction. Everyone has a story. Everyone has a journey.

I made my purchase and wished him a good day.

He looked at me and said, "I should have done something shouldn't I?"

I said, "You served the mom and her child with respect and with care, you were the only person in this store who modelled for those kids what dignity looks like. I think that's good, don't you?"

He nodded, but he didn't believe me.

Sunday, April 23, 2017

A Letter To Someone Who Will Never Read It

To The Handsome Young Man at the Movie Theatre,

I know what you saw.

Of course I do.

I have lived in my body and 'the community' for a very long time. I have seen myself reflected in the glass of the mirror and reflected in the eyes of those, like you, repulsed by me. So, yes, I know what you saw. 

You saw my body.

You saw my chair.

You saw my age.

But, of course, I know what you didn't see. You didn't see anything that even a warm greeting would have elicited. You wouldn't have heard the warmth in my voice as I responded to a casual hello, because, of course, you didn't offer one. Instead you offered me your face.

You probably know you are handsome. At 18 or 19, you have a good solid set of shoulders, you have blond hair dusted with bits of gold, you have the bluest eyes. I know you know that too. You will have seen it in the mirror, you will have seen your likeness reflected in the eyes of people, even strangers, who admire how you cut your way through air.

But, your face, when it shows judgement, when it curls into a sneer of superiority, when it sets hatred in concrete, is ugly.

Really, really, ugly.

I wonder if you know that.

I imagine you spend time in the mirror smiling at what smiles back. I imagine you check, maybe with some panic, for flaws and are pleased with finding none, or none that really matter. You probably have never seen the face that you showed me.

All I was doing was coming out of a door that you wanted to come through. You had to wait a second, just a second, but that was too much for the likes of me. People like me can't expect, of people like you, manners, or courtesy or decency. We are too low in your estimation. 

You made it clear who you thought you were and who you thought I was.

I am what you saw. but I am more than that.

I have a heart that loves and a heart that feels and a heart that can be generous.

But you forget, in your moment of superiority, that I see you too. But you don't think about that. You don't think about that face of yours, you don't concern yourself with the angularity of your movements when angry, you don't think of that fact that while you cannot, at that moment, see inside of me, I can see inside of you.

I am more that what you saw.

I hope, I really hope, that there is more of you than what I saw.

And yes.

You should worry about that.

Saturday, April 22, 2017

Even Us

It took some work but we managed to replace the footrest on my chair. We found a company, Reliable Medical Supply who were able to assist us quickly, easily, and without fuss. I rode out of the building, the new footrest on and I felt completely restored. I'd ridden around pushing and holding my one leg up at the same time for a couple days and as a result had pulled muscles in my back and tired those in my leg. I had to ask Joe to push me a couple of times, but only when, on break, I had to get to the bathroom quickly.

At the end of the day we went to a very large grocery store that, miraculously, wasn't busy. I set to doing a very long push, up and down every aisle and back and forth across the store. I needed to exercise but I also needed to feel in control again. It was great. I knew I'd done a long distance, I had tired myself out, and I knew sleep would come easily.

There was a moment though that I wanted to tell you about. We've forgotten our blue badge so we can't park in wheelchair parking. It had been raining so Joe let me off at the door and, though there was quite a up slope into the store, I knew that I could do it easily. I was pushing up when a customer coming in ran at me, arms out, ready to inflict help upon me. I didn't see her coming.

I did hear a voice saying, "Don't, he didn't ask!" When I got to the top I looked back to see a young woman with Down Syndrome, standing watching me. She stayed and waited until I was up the slope and in the store. I thanked her.

She said, "I hate it when people just help me. It's just another way to call me stupid and helpless." I told her that she was right. I didn't like the message behind unasked for help.

Ban the 'R' word in speech and in action.

Ban the helpless image in speech and in action.

Speak with respect, act with respect, it's all that anyone really wants.

Even us.

Especially us.

Friday, April 21, 2017

Urine, My Post and A Comment

Yesterday I posted something I thought very funny on Facebook. I had been rolling around in the pharmacy department of the grocery store where we were shopping and I noticed, for no reason at all, that they had a huge selection of men's incontinence wear. I  really surprised that, at my size, they had some that would fit me. Hell, I have to go to to big and tall store to buy clothes and here were incontinence briefs in my size. I joked with Joe that now I could relax and grow old. We both laughed. I that I was going to put this on my Facebook page.

And I did.


Oh happy day!
I was rolling around a pharmacy and discovered that they have men's incontinence products in my size. I can relax and grow old.

Immediately people began responding, I was gathering a lot of 'likes' and a lot of smiley faces. I was glad because I thought it funny too. The someone responded saying that they were surprised at my post and asked if I was making fun of people like her son who, because of his disability is incontinent and doesn't find it funny.

My first response was a little bit of annoyance, let's be honest here, because, to me, obviously I was making fun of me, my size and my age. It was just a joke. A few seconds later, I can't think while annoyed, I clearly saw her point. I didn't have time to do anything other than delete the post. It wasn't a hard decision for me. I hadn't thought through what I'd written and what it could mean to others. My bad.

Then I received several messages saying I shouldn't have taken it down, that it was funny, that in this case it was obvious what I was joking about, that people are too sensitive, that I shouldn't censor myself because of the sensitivities of others.

It was the last one that got me, I shouldn't censor myself because of the sensitivities of others. That's the one that made me glad I had done what I had done. Because of course I should. I don't want my writing or my speaking to cause unnecessary pain or distress to people. I want to challenge people, that's my job, but when a joke, which has no meaning other than to be a joke, is one that could easily be interpreted as making fun of others, in this case, others who wear incontinence products, I am compelled to delete it. Of course I am. Moreover, I'm glad she came on and had the courage to challenge me.

Dialogue isn't to convince others you are right.

Dialogue exists so that both parties learn, both parties grow, both parties end up examining their points of view.

I hope people continue to take me on and say, 'hey, do you hear what you are saying' ... I am old enough now not to be threatened by the idea that I'm not always right. That I get things wrong. That I don't always think things through.

It doesn't matter that I wasn't meaning to cause hurt or offense, what matters is that I did.

So, it's a simple solution.

Take it down.

It's important to say that I've had people rant at me (and no ranting happened in this situation) about taking down posts wherein I speak of people with disabilities having voice and choice and adult goals and dreams. I examine the posts and if I still believe that what I said is accurate and important, I don't make the change.

This wasn't that.

And because this wasn't that, I took the post down.

Because that's the right thing to do.

Thursday, April 20, 2017

Again

I am again facing wheelchair problems. After arriving yesterday we decided to go out for lunch. Got out of the car and into the chair and SNAP my footrest broke off. This happens often enough to be tedious and it meant that we had to go into the restaurant and then do some shopping with me pushing while holding up one leg.

This is hard.

The good thing is my fitness level has changed since last a footrest broke and I was able to push fairly far and fairly fast even under these conditions, but, it needs to be fixed quickly. Have found a place to replace it and will get a new set tomorrow.

We were lucky this happened after getting through the airport and into a rental car and to the hotel. The big stuff was done. We were also lucky that I had the ability to manage with it fairly well today but that's where the luck ends.

This is a trip where I decided to challenge myself. I'm doing three brand new lectures, one of them a full day workshop. I didn't need to have the additional challenge of wheelchair problems along the way. But things happen when they happen and we deal because we have to deal.

Tomorrow my chair should be back in business.

I'm hoping that the universe understands, that, I'm not in need of any more lessons for a little while.

Wednesday, April 19, 2017

A Third Option

We arrived at the airport and I pushed myself to the check in area. There I was spotted by a woman, an employee, who came over to ask me if I needed to go to special services to get me to the gate, then she looked at Joe and said, "Or, will you be taking him?" I said, archly, "There is a third option, I can take myself there." She looked flustered and trying not to slip into annoyance, "I suppose."

Now, I'm not quibbling with her pointing out where special services was, I know where it is, I'm a frequent flyer, but many wouldn't. I was just annoyed that my ability to get myself where I was going was simply discounted as an option. I'm disabled. I must need help. That is the natural order of things.

Now, there isn't anything wrong with needing help or asking for help. What's wrong is the assumption that, of course you need it. It would only have taken her a few more words to make the interaction respectful rather than disrespectful.

The option of independence.

The idea of self reliance.

The possibility of competence.

The lowering of expectations for people with disabilities is a killer. It kills the will to try. It kills the push to push. It kills the desire to dig deeper wells.

More, there is a real need to please those who need to be pleased. Her annoyance, while hidden as well as she could. was real.

Later that same day Joe and I were going out a door. A clerk who worked there dashed to the door saying that they'd hold the door for us. Joe was already through and holding the door. I said, "It's okay, we've got this."

We heard a loud exasperated sigh, then, "You mean I'm not needed?" It was said as a joke. But it wasn't a joke.

I see so many people with intellectual disabilities who bow under the weight of others needs to be needed. I see so many who live limited lives because of limitations set by others. Tragic.

Meaning well isn't okay if doing harm is the result.

When I say, "I've got this."

Trust me.

I do.