achievements

My nice friend Steven Kapp came to visit and it seems necessary to acknowledge not just Steven’s niceness but the fact that we rode four different kinds of trains in two days.

Muni N Judah Outbound from Montgomery Station to 19th and Judah

Muni J Church from Church/24th to Church/18th and back

Caltrain to Redwood City

Muni N Judah from 9th and Judah to the ocean and back

BART from Daly City Station to San Francisco International Airport

and AirTran, the airport shuttle

I’m not trying to make anyone else feel inadequate but Lord, we are really stars of the railroad, aren’t we?

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Recently I've been having some times when I kind of walk by stumbling forward without bending my knees and I also grab on to handles and railings to pull myself up and forward as much as possible instead of using the muscles in my legs to push myself up. I think it's just from walking a lot on those days and generally being exhausted as a person.

Anyway, I realized that if anyone asked me why I was walking like this or using things to grab and push off of, I would say, "I'm just doing it for attention," and I would believe it.

I don't think I'll ever know if this general orientation toward not believing in or fully feeling my negative emotions or discomfort is just an organic "part of my disability" or a side effect of how my disability and other things were treated while I was growing up. Either way, it pretty much defines me.

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There's something I think about when I see parents of disabled kids fussing about how disabled people should be more tolerant of murder or whatever other crappy things parents want to do. What I think about it is not going to change the mind of that kind of person, but it's still something I think about.

I am never going to be able to spend a single second of my life away from a disabled person and I am never going to be able to spend a second not thinking about how to manage my disability. I didn't get to spend the first few decades of my life without a disability. I don't get to walk out of the room away from the disabled person who I am the only caregiver for. I don't get to send the person to respite so I can get a break.

Yes of course it can still be tough and a lot of work to take care of someone, even if you can walk out of the room and take a break for a few hours or even for months or a year. But I don't need to put myself in a parent's shoes, because I've been doing it longer and harder.

Services

Liebjabberings was curious about what kind of services I'm thinking about when I complain about people like me not getting services. I actually have never thought about this much because I know I won't ever get them, but I got interested in thinking about what they would look like.

A main thing I'd need is direction to work on the non-urgent things I mentioned in a post a few months ago. In that post, I discussed how I'm usually able to get myself to get up, commute, work, eat, and occasionally shower, but it's too hard to do anything else and that creates problems for me.

So for me, that could be meeting with a support worker and the worker could list things most people do, like getting haircuts, regularly going to the doctor, etc. and I could say if that's something I want. I could also add other goals that aren't on the list, like getting new curtains (random example).

If there are things that could be done with the worker in the short term the worker could just walk me through those things and/or do them for me. It might not be realistic for the person to actually go with me to get new curtains and stuff, so I think the way they would help me with something that takes place over multiple days would be to schedule with me exactly when I would do it and maybe check in with me by text to see if I'm able to do it.

A big problem for me is dealing with food. I usually don't prepare food for myself because it's too much work, especially when I'm feeling foggy and tired which I usually am at night. The main reason I have trouble paying my rent is because I don't really have enough money to get takeout or junk food that much, but I do it a lot.

I think there are a few possible ways this could be dealt with:

1. A worker comes to cook for me.
2. A worker comes to supervise me while I cook, or doesn't always supervise me in person but we spend a lot of time deciding things I could cook and planning what I will cook every day for the next week. I think this could make things seem a little easier but without actually doing it, it's hard to be sure whether I'd consistently cook for myself if I had more guidance.
3. I could be given more money so it doesn't affect me badly to get takeout or go to a restaurant instead of cooking for myself.
4. I could somehow get a meal plan at a college cafeteria--this would be nice because I wouldn't have to do dishes, but the obvious problem is that I'd have to go somewhere else to eat and that could be kind of inconvenient. It also would probably cost more money.

I'm not really sure which of these options would work but the short version is I would want some help with food.

Another thing I would want is someone to advocate for me and help me advocate for myself. I have a lot of trouble saying no and I also have a huge block on talking about my problems with fatigue or telling people when I'm sick or having a dissociative episode or haven't slept, or basically anything that makes it harder for me to do stuff. The reason this creates problems for me is because I can't call in to work if I am not doing well because I can't talk about what's going on. I also have trouble because one of the agencies I work for will sometimes ask me to work extra hours when it's not really healthy for me to do that; recently I've been trying to deal with that by not answering their calls and being so difficult to schedule when I do accept a job that they end up not giving me the job. I really don't like treating people this way but I feel like I don't have a choice.

So the short version with that is I would like someone that I can trust to support me when I'm saying I shouldn't go to work, work extra hours, etc., even if it's hard for me to articulate why and the person has to work to understand what's going on; and I would like the person to also be someone who can call in for me and also help me learn more about how to talk about this stuff better so that I don't have to go to work when I'm sick.

I'm not actually 100% sure if these things would make me have more energy/cognitive function and be able to do more "fun" things. Maybe I just don't have that much energy/cf and the only way I could pursue fun activities would be if I did not have to work. But I like my job, so that isn't something I would want.

I think that even if these things didn't make me able to do more they would improve my quality of life and my health a lot.

Support free living

The main reason I am unable to have any conversation about disability issues with people is because of their assumption (spoken or not) that I’m not really disabled, that I don’t have it bad enough to have an opinion.

I’m not saying my life is terrible, but I have spent the last few years settling into deepening layers of disappointment. I know that without any services, I might never be able to do anything but work--literally in the sense of dragging myself out of bed in the morning, going to work, coming home, and collapsing, hopefully getting some food into me on the way. This isn’t the worst problem anyone could have--at least my job is fun. At the same time, I used to want to also work on artistic things; I wish I could spend more time with my friends and make some new ones; I wish I could volunteer; I used to want to have kids someday.

The gradual giving up of these things is not by any stretch of the imagination comparable to someone who will die or be seriously unhappy or ill because of lack of services. It still bothers me sometimes.

I know that if I trundled on down to the Golden Gate Regional Center or whatever, they’d laugh in my face. That bothers me too.

The long list of things I do not find positive or nice or reasonable or anything other than infuriating: telling me how smart I am. Telling me how articulate I am. Telling me I need to acknowledge the difference between myself and people who actually get services--yeah, I do see the difference between us, they get services. That’s a big fucking difference as far as I’m concerned.

So that’s my bad attitude in a nutshell. I wish I could be more compassionate and rational but I got worn out about it pretty early on.