Stairs mean I’m not welcome – even if you disagree

March 28, 2017

Last night I went to an event and I arrived to find that the only parking was down the street, and the entrance had 3 stairs. Are you kidding me!?!

This is far from the first time, but I admit it was more surprising than usual. After all, this event was big on promoting inclusivity. Apparently that covers a lot of minority groups, but not those who are disabled. I was lucky I was able to do those stairs last night. Some days I can’t. And what about everyone else who can’t? They would have shown up, only to have to turn around and go home.

I remember going to my 10 year high school reunion and arriving to find a flight of stairs. I was pissed. I almost turned around and went home. I was in so much pain that I had almost stayed home in the first place, and now stairs! They were basically saying that no one who had developed health issues that limited their use of stairs was welcome, not to mention our classmate with cerebal palsy who was in a wheelchair all through our school years together. WTF, organizers?! I know she wasn’t in your “cool” circle but that doesn’t make her any less a part of our class!

I said something to the reunion organizers at the time. Now our 20 year reunion is coming up. I should probably say something again, just to be sure. Is this really so hard?

Last night I said something, too. The organizer immediately tried to point out a tiny back door that of course I hadn’t known existed. I told him, “If there’s no sign, it’s not accessible! If there’s no parking, it’s not accessible!” Because if someone can’t walk far, they can’t get from that parking lot to the building. And how is someone supposed to know to come around to the back door? Never mind not everyone can walk that far. And I’m not sure the path is wide enough and even enough for a wheelchair. And it’s not lit. So yeah, really not accessible.

And the truth is, there was a sign. There was a big, huge, blatant sign: “Disabled People Not Welcome!” That’s the sign I saw when I looked at those stairs.

Would you go to an event that had a sign saying “No Jews” like the signs my grandparents literally saw years ago? How about a sign saying “Whites Only” with a door for racial minorities around back? No? If those aren’t ok, then why does our society feel it’s ok to have figurative “Able-bodied Only” signs? They’re everywhere, and I’m completely fed up. THIS IS NOT OK!!!

The one bright spot was that at the end of the event, I mentioned something to the other participants. It was disheartening that they hadn’t noticed something, but at least their response was better than the organizer’s. They didn’t try to justify anything. Instead, they immediately started brainstorming where next month’s event could be held that would be accessible.

That made me happy. Then again, the bar has been set super low. We need to raise it, because no one should be able to get away with that attitude unchallenged.

How do you handle these kinds of situations? Please comment!

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Limitations, Pain, Parking, Rants | Permalink
Posted by chronicrants

I need help but I’m not helpless

February 13, 2017

Maybe it’s because I have a disability. Maybe it’s because I ask for help. Maybe it’s because I’m a woman. Maybe it’s all 3. Whatever the reason, it’s irritating.

It’s winter in Boston. Winter in Boston means snow on the ground. Not every day, but enough of the time.

2017-02-12 14.06.26.jpg

It’s beautiful. It’s picturesque. And it’s a pain in the ass.

I love the snow when I’m indoors, but then I need to go out. It’s slippery, and I’m terrified of falling and further hurting myself. I’m not steady on my feet, so a fall is more likely. I need help shoveling out my car due to my back and wrist pain. Suffice to say, it’s difficult.

Luckily, friends and strangers have been kind over the years, and in my new home, that hasn’t changed. Folks have helped me shovel out my car, and for that I’m grateful.

What I could do without is the “explaining.” Today a neighbor helped to shovel out my car while I cleared the top, which thankfully I’m still able to do. It was really sweet – we’d never even met before. I was really appreciating his efforts. Then he told me to “try moving back a bit, don’t gun it, if you get stuck you’ll want to…” and he proceeded to tell me how to back out of the parking space. I’d already told him I’d grown up here and lived most of my life here while we chatted about Boston winters. So why did he think I couldn’t back out of a parking space in the snow (if you’ve never done it, yes, it’s tricky. But once you’ve done it for 20+ years, you usually know what you’re doing.)

The other day it was someone else telling me how to back out of a space. A couple weeks ago, someone warned me as I got in my car that the roads would be getting slippery soon. What the $%#@?!? I learned to drive in this stuff back in the ’90s! I know how to tell when roads are getting slippery, for crying out loud.

I need help. That’s true. I won’t deny it for a second. But I’m not entirely helpless. There’s a lot I can do and there’s a lot that I know. Driving in the snow is one of those things. So I wish people would stop condescending to me.

4 Comments | Educating, Frustration, Insensitive, Limitations, Pain, Rants, Support, Thoughtfulness | Permalink
Posted by chronicrants

Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.

2 Comments | Fatigue, Isolation, Limitations, Pain, Raves, Unpredictable | Permalink
Posted by chronicrants

When everything goes wrong

January 17, 2017

Lately I feel like I’ve been working all the time. But I don’t have a job. So what the hell is going on?

I had to sit down and think about it, but I think I’ve figured it out. It’s things like the last 24 hours:

  • I got my new laptop, opened it, started it, and found a problem. After an hour on the phone with tech support I was told the laptop needs to be replaced. But the office that handles that was closed for the holiday, so I had to call back today to arrange that. They put in the order and someone will be in touch with me within 48 hours. So I STILL don’t have a working laptop and I’m STILL spending hours doing things that should take minutes. Like the super-long message I was writing, that was almost done, and that was lost when my laptop crashed for the millionth time a few minutes ago.
  • My new apartment is still a mess. Since I can’t set up my laptop, I might as well put together some of the Ikea furniture. I opened the box last night, make sure I had all the pieces, and reviewed the instructions. Totally doable. Today while I was on hold for the SSA (I’ll get to that in a minute) I figured I might as well put it together. There were 8 steps. After 4 steps I was in pain and was going to take a break, but I was excited to be making progress. Everything else is a mess. I wanted to at least get one thing right! So I did step 5. And then steps 6 and 7. I did half of step 8 when the phone was answered. I spoke to the guy for a while, then returned to the furniture. I just had to put in 3 screws! Yay! Except the last 2 wouldn’t go in. I played around and found the problem: 2 of the holes weren’t drilled right. I can’t finish it. I need to exchange the piece. Ergh!
  • I had a simple question about my social security disability. I didn’t have the number for my new local office so I called the main number. I was on hold for 45 minutes, but at least I was able to almost put together some Ikea furniture in that time. Finally I spoke to someone who couldn’t answer my simple question. He gave me another number. They could definitely help. I was only on hold 5-10 minutes before I spoke to someone who gave me another number. This time I’d get answer. And I actually did. It took well over an hour, but I got an answer to my simple question. Why can’t the SSA’s folks at the main line answer such simple questions? Still, now I have to find a way to get the paperwork done without a reliable computer. Hmm.

No wonder I always feel so busy! I’m trying to move into a new apartment, but I can’t make progress on setting things up. I have digital files scattered everyplace. Things are a mess, and it makes my brain feel messy.

This isn’t so bad. I know it. These are pretty simple problems. A messy home is ok. A lack of computer for 6 weeks sucks, but isn’t the end of the world. Spending hours on the phone (if you include the computer stuff and SSA) to not have my problems fully resolved sucks, but it’s survivable. Still, when I add it all up, it’s no wonder I feel like I have a job, like I’m always working. If only I was getting paid for this “work”!

Now the key is to find ways to relax. To de-stress. Because stress is bad for chronic illness and I’ve been feeling it. I slept a lot last night. Too much. And I woke up tired. This is taking its toll, and I need to maintain my health. I intentionally blocked out 3 days this week as “me” days. Yesterday was the first. I didn’t get as much done as I would have liked (setting up the new laptop was on my list) but I made some progress. Today I made more (even though the furniture wasn’t fully built.) I just have to remember that it’s a process. And then I need to take time to relax.

Which means it’s now time for a hot shower, a long walk, and a good book. Then I’m off to my new mah jong group so I can use my brain in a better way.

What do you do when you feel overwhelmed and you need to relax? What are your favorite go-tos?

Leave a Comment » | Frustration, Limitations, Pain, Rants | Permalink
Posted by chronicrants

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