
Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
And it rather makes my point. The abled world is not capable of discerning it's own discrimination even while practicing it, and therefore will never correct it sufficiently to make any real difference for us. We have to do both parts, wherever possible.
State and county offices are excellent places to operate this, because they are required to be ADA compliant and they know it. BUT - I have found that they will seldom post their accommodations. You do have to ask...or insist, if necessary.
Example - it is not 'taking cuts' to go to the head of a line and ask if you can wait seated - even if you have to ask for a chair to be brought.
It is not an imposition to ask to do transactions by mail, fax, or phone - even it takes getting a supervisor on the phone.
It is not illegal to request extra time to meet deadlines due to disability, regardless of who imposed said disability OR the deadlines. The ADA is in place to support your constitutional rights, and those rights by their very definition trump all other laws and rules.
Document your request if you have any trouble, quoting the ADA when you do so. Even judges will grant postponements and extensions (sometimes).
'Accommodations' which require the presence of an assistant or advocate of any kind are NOT accommodations to you - those are accommodations to the abled to help THEM in dealing with you. It is NOT pitiful or pathetic to insist on doing for yourself. It's also not terribly brave. It's simply dignified. This stuff about 'dying with dignity' is a good sentiment - but it's like being nice to guy who just got fired - a very short-term arrangement. And it pretty much pales in comparison to living with dignity, which (hopefully) lasts a good deal longer and generally takes a lot more effort on everyone's part.
To whatever extent possible and necessary, we adapt to 'their' world. To whatever extent possible and necessary, we get them to adapt to 'our' world. After that, we are free to create whatever world we need and want.
And I know what I'm getting for Xmas! I'm posting a pic, and I know just what to do with Swarovski and glue! Posting a pic of that bad boy...
Saw the funniest thing at the DMV - I had to bark in back of the building and hike (uphill) to the front. So I was wiped out before I even got to the door. On my way out, I pass this lady in these 4 inch platforms, walking like a toddler and doing her best not to fall on her bum and destroy her carefully crafted hot mami thing she had going on there. I thought about the lines inside. Then I looked at my flip-flops. Then I looked at my cane. The phrase 'fashion victim' came to mind. Then I grinned all the way back to my ride...
I don't think there's a quick and easy solution for that. I've learned to plot and plan as much as possible every excursion into their world - not that I'm too slick at plotting and planning these days. But I do try.
I've been in 6 states in the last 30 days, doing all kinds of things I didn't feel at all up to handling. I could fill a few journals with all the things I encountered that are late/overdue/mismanaged/mangled in part because I wasn't up for it all - and that was including insisting on taking advantage of every single law/accommodation/assistive device/personal help I could put my mitts on. And that was all on the way to my big plan of 'dropping out' once and for all.
I learned some things, but bottom line, we are NOT there yet. Even the most aggressive activists have not made it happen yet. True, we have kneeling buses - which don't do you any good if you can't even get to the bus stop in the first place. There's wheelchair service in the airports (service with attitude in some). Don't bother. The planes will not accommodate an electric scooter, and you will still be expected to tramp back and forth from the parking to the door and then to the counter and on to the plane once you reach the terminal. Government offices claim to be accessible, but they are not. Even the federal courthouse in my area makes you park a half mile from the building and stand in lines. The electric scooters certain stores offer are a complete waste, when you must walk to the store to get them and then leave them at the door right when you need to get your packages back to your vehicle. The general attitude seems to be well, if you can't even handle it with all that 'help', then you shouldn't be here.
On the flip side, I have received help at critical moments from very kind individual people when I least expected it. The cane does nothing for the usual hassles and ignorant types, but does gain the attention of the kinder souls around. It's a good tool. Asking for help works wonders sometimes, but not others. I've found very distinct differences form community to community and from business to business, even those owned by the same larger company or agencies under the same local government - so that's clearly a management problem. I've tried addressing it as an assist to management in running their businesses better, but frankly, if they don't already get it? The result is generally a lot of yada-yada lip service that goes nowhere. I can be as polite and patient as you please. They are not very happy to be hearing from me.
I have believed for some time now that our best asset is still the power of the internet. The disabled are the fastest-growing population in the country now. And overwhelmingly, the poorest, which creates its own barriers. BUT - these kinds of statistics have not stopped some of the greatest events in human history - it's what usually stirs them to happen in the first place.
I've been working with others for some time with the idea of creating a disability portal (not like DS, not competitive with what it does) which could help us address a lot of this publicly as consumers.
For example - what if you could tell the whole world that Happycakes Corp. has refused you parking/access/customer care? Or that the Deepsticks County Clerk will not allow you to sit down or refuses to assist you in filling out forms with tiny print you can't see? Or that the transaction you are trying to do requires you to go to a place multiple times as if that were reasonable?
If we had that, you would be able to get the word out there without tracking down some VP of Public Relations 1000 miles away or an elected official who has all day to not think about your call to their assistant. Likewise, you could say when they're doing an outstanding job and hand a thank you to their best people.
They want to make it all about the numbers? Okie doke. Let's do that. Message me if you want to discuss further...I already have everything I need but hours in the day - mainly because I'm still sluggin' my way through the daily morass I just described. Frankly, I wouldn't put one more second into all that garbage if I didn't think we could change it effectively. I TRY to look at it all like a training ground for what I have in mind.
Your thoughts?