When you think someone should get it and they don’t

I’m incontinent,

If I had to pick a part of my disability that makes me the most uncomfortable, I would say this is it. So for that reason I try to be as open as possible about it, to not let it win.

Now having grown up disabled, this lovely part of our soecity called exclusion, pushes me to be in the same circles as many other disabled people. A lot of people think that this is actually inclusion, but from experience they don’t actually care what disabled children have in common, the fact there disabled is enough. And pushing is together is easier than creating more accessible inclusive spaces where we just get to be, but now I’m getting a little disstracted here.

As a result of this exclusion, I happen to know a lot of disabled people, simply because they are disabled. Now while this can sometimes be useful, as we have a lot of shared experiences, not everything about us or what we believe is the same, simply because we are disabled. So this can make for some interesting friendships to say to least.

Some of these friends are also incontinent, and this is something that I personally am thankful for that we have in common, due to how I still emotionally struggle with my incontience. Anyway, I was with one of my friends the other day, who pointed out that as a result of incontinece there was a certain smell in the area. Now where she this could have come from many people, but I’m pretty sure it was me. Lets just say she wasn’t very nice about it,

I hope the way I’ve explained this makes sense as I’m still pretty upset by it so I may have been vague, let me know if it doesn’t.

What I don’t understand is no matter who was responsible for the smell, why they had to make a big deal about it.

It’s not like anyone is incontinent by choice, or making a smell by choice, and it could just so easily be them. I think that’s the part that really gets me, I’ve known it to be them before and I have never said anything. Normally I don’t care about things like this, but given who they are and the specifics of the issue, there reaction is really bothering me.

I guess just because you have a certain issue, doesn’t mean you will have respect and understanding for people who also have that issue.

You have to take the advantages when you can.

So I’m going to do my best to explain the advantage wheelchair post from Friday, forgive me though as its taken a couple of days.

As I believe I said I went to a concert on Friday, one which was nicely accessible but had some key elements of inaccessibility, as these things often do. There was also ableism present, which had some good and bad consequences during the evening.

I have to start with the fact that I could get in the building be a major win for accessibility. This is not always a certainly, but I of course checked this out beforehand so was not surprised. The surprising part came when they allowed us to skip the entire queue. Which is obviously not equity, but if anyone wants to be disabled to take this one perk, I’ll swap.

We were then able to be near the front, leading to a great experience. Now my view was obscured a little but I knew it would be. I chose not to go on the accessibility platform and that’s the price of that decision. Its just the way it is, equality of equity, costs.

Now on to the ice cream. Earlier that day before the concert I went to go see someone close to me and I was given free ice cream by someone they know. They thought they were doing something nice, and I won’t lie the ice cream was nice. But the ableism of them giving me the ice cream was weird.

While it was nice to get upfront at the concert and the ice cream wss nice. I would have had a perfectly good time at the concert if I had the exact same access and treatment as everyone else, and I can pay for my own ice cream.

I also hope that a day will come where I won’t have to check if I can get into a building.

School reunion

It’s been 10 years since I left high school and they’re looking at doing a reunion. The other day I reminded them that I am still on fact disabled and need wheelchair access. I was told they would make sure there was access. But I googled the place it looks like we’re going to go, and I can’t tell if its accessible from the pictures and now I’m scared.

Having to be in charge of making sure you can actually get to places is scary and annoying to say the least.

I can’t just go to something because chances are no one has thought to check that it it’s actually accessible for me.

I’m trying not to think about it right now. Maybe it will be accessible right? Or maybe they’ll choose a better venue. No point in worrying until I know what I’m wearying about.

For the first time in my life.

Last week, kids in the street shouted at me and my partner, who is also disabled, in the street. They directly referenced the show South Park, and the only disabled character within it, Timmy. They repeatedly said and shouted his name at us in the street.

While I am well experienced in ableism, in direct and indirect hate from others. But for the first time in my life I experinced being directly shouted at in the street the other day.

I don’t really know what to say about this, even though I am writing this post days later, I don’t know how to process the emotions from this. It was so direct, so unexpected.

Exclusion is everywhere in the world. Inaccessibility is in every building. It is everywhere, like a constant background noise to my existence. But it perhaps feels the strongest in other people’s words.

Legacy.

What is the legacy you want to leave behind?

This is sort of an odd question. Not least because I forgot about answering it, hence why I’m doing so several days later, and this question is about doing things so that you are not forgotten.

I would like to be remembered for being me. But that in itself does not fulfill any kind of legacy.

I would like my legacy to be that of individual and societal acceptance specifically of emotion. How this translates practically into a kind of legacy I don’t know.

I suppose really what I want my legacy to be is that of personal acceptance of who you are, and for society to do the same.

In other words, I want my legacy to be the inclusion of others in society, who are excluded and of course, want to be included. What precise form this takes is almost irrelevant as long as it fulfils its purpose.