disability services

You can tell a lot about a DD agency by how they treat their disabled employees.

There are only a few developmental disability agencies in the area. In California, there’s tons of agencies. Here, I only know of the in my local area. I only have experience with two. Both of them employ some people with developmental disabilities.  But they couldn’t possibly do it more differently. 


Walking into one office, I saw a man with a developmental disability delivering the mail.  He had a staff person with him directing him where to go.  He clearly — very clearly, from the standpoint of someone with similar problems — had a movement disorder that made it hard for him to stop going in a direction once he’d started.  So he bumped into things and people a lot.  He bumped into me.
His staff person immediately started shouting at him and demanding that he apologize to me and pay more attention to where he was going and on and on and on.  He just stood there looking more and more upset.  I knew, and he knew, that there was nothing he could’ve done different.  And that was only one of many such incidents I saw there.  Disabled employees were not considered the same as nondisabled employees at all. 


Then I went into this other DD agency.  It was an agency that helped DD people with two things:  Self-directing our own care (something I was looking into), and finding gainful employment.  So maybe it made sense that they’d be different.  Or maybe not.  I don’t know.   


All I know is that every time I walked into the place, I saw a woman with a developmental disability answering the phones, typing at the computer, and doing all the work a secretary normally does, without any indication that she was any different from the nondisabled secretaries. 


That told me that this agency was serious about their mission to find employment for disabled people.  And also that they truly respected us.  They never talked down to me.  If I came in unexpectedly, they would drop everything and come talk to me about what I needed. 


I didn’t end up going self-managed with my care, although I still might do that someday.  But I have to say that I was incredibly impressed by the difference in the two agencies.  This isn’t the first time that I’ve seen such a difference between agencies, reflected in how they treat disabled employees.  And this all happened years and years ago. 

 
But I thought people should know that this is something you should look for, if you’re scoping out agencies to give you disability services:  If there are disabled employees, how are they treated?  Do they seem like just another employee, or are they treated like “clients” who just happen to be doing work (worse still if it’s “make-work”) in the office?  Do they get publicly humiliated if they make mistakes, including mistakes that they clearly can’t help making?  If they have a job coach or another staff person assisting them, does that person seem to be basically running their life, or are they providing assistance in a respectful way so that the person can do their job?  Is there constant tension in the air between the DD person and their job coach?  Does the job coach get on their case for things that aren’t even problems (like rocking, quietly humming, etc.) while nondisabled people get to be much louder, much more disruptive, and nobody treats them badly for it? 


It’s things like that that can tell you a lot about an agency without them even knowing what they’re showing you.

Sometimes you think someone whose job is to provide you w/ accommodations w/r/t your disability is treating you really really really well & is ultra-supportive but in reality they’re just providing you the bare minimum of human decency, but you’re so used to receiving less than that, it feels like you’re royalty.

thedemoncloset replied to your post “print-witch replied to your post: “(1) Hey, I noticed today a painting…”

I second this loving of your blog. I wish we learned about this in school (I have a degree in visual arts and we hardly ever discussed poc and it always frustrated me) thank you so much for your dedication and knowledge.

Thank you!

It’s been a massive frustration for me, too. 90% of the stuff on this blog is NOT anything I learned in any educational institution. What I DID learn there was how to do research in a very thorough and intense manner. I learned how to make it more accessible through disability self-advocacy and activism, as well as working in disability services.

Overseeing and processing entire undergrad history curricula and watching the same topics get skipped or glossed over EVERY single time finally pushed me over the edge, and it’s a big part of why I started Medievalpoc in the first place. Another part is being a lifelong Epic and Medieval Fantasy fan, being told I’m not “Historically Accurate”.

I’m just sick unto death of “it’s not the focus” or “this is an exception” or “there WERE no [insert currently marginalized group] people in…[insert literally any historical period]” or “we didn’t have time to cover that.” I’ve gotten messages from people who took three semesters’ worth of Elizabethan era related classes and never knew about the crucial role of the Black British population 1500-1600, or those who took a 300 level Russian Lit class and never knew Pushkin was mixed race.

Can anyone help Katerina?

I don’t have the ability to help other than using the fact that I have a lot of followers here and am well-known in certain segments of the Internet.  So if anyone at all is able to help a multiply disabled woman who’s had her services canceled and further services denied and abused through neglect and people have lied to Adult Protective Services and it’s a mess.

If anyone can help please go here:

http://textualfury.wordpress.com/2014/02/08/the-time-i-got-naked-on-the-internet-nsfw-and-trigger-warning/

TW, and NSFW, both apply to her post (at least the NSFW part applies to the naked YouTube video where she documents the damage to her body, some of which reminds me of the awful rashes I used to get before I got my breast reduction, so I can attest that those things are painful without treatment and sometimes even with it).

I used to talk to her years ago, she has a lot of similar issues to mine, and nobody deserves this but it hits harder when you know the person and please if anyone can help, please do.

Oh and sorry for spelling your name wrong but I can’t figure out the right spelling due to trying to do a lot of things at once right this minute.  Very sorry.

So when I was earning my Bachelors at college, the classes would always start with the instructor going through the syllabus and explain that “If you have a disability, you need to tell us because we are not allow to suggest or assume you do.”

Why is that?

Is that a rule so some neurotypical kid doesn’t get offended at the suggestion that they might be disabled? Because having a instructor say “Hey, you’re really struggling, could it be because you have ___?” WOULD OF REALLY HELPED ME OUT.

Petty? Really?

Today, after a very unpleasant phone call, I was called petty – not once but three times – by a woman paid to handle the issues I was calling about.

And who knows, she may be right. Maybe my expectations are too high, but is it really too much to ask that I find my kitchen in the same condition when I get up as when I went to bed?


The biggest issue is them moving things around. In the home of someone who uses a wheelchair to get around, and who can’t just stand up or get on a stool to reach things that are too high, that’s a big no-no. I would have thought a lot of it is also common sense. Surely, if there’s one stack of plates of one kind, and another stack of plates of another kind, and you’re holding a plate of the first kind… surely you’d put it on the correct stack? But, no. It goes on top of the other stack, teetering away there ready to fall out and get smashed to smithereens. And I can’t clean it up.

Thankfully, that last bit hasn’t happened yet, but I’ve already got more than enough evidence that using a grabber/arm extender to reach things on the top shelves is a bad idea. Salt over the worktops and floor, anyone? So it’s really not a stretch to imagine the damage that moving these things can do.

But, apparently, that’s my problem. She didn’t even let me finish the sentence regarding the safety issue, but went right on to say, “I think you’re just being petty now. Really, Emma, you’re just being petty.” Well, excuse me for being concerned about the safety of myself and your carers.

The worst part? I wouldn’t have bothered calling if not for my support worker encouraging me not to put up with it. The best part? When said support took the phone and started asking for names and details. “Social services? Oh, um… I’ll see what we can do.”

I didn’t even get to bring up the third issue, because she was too busy calling me names. By the time she was done, I was shaking and in tears, but their records tell them that I can’t communicate well over the phone (or face to face, actually). The more I think about how I was just rail-roaded – bullied – the more furious I get.

Only, I also feel bad, because they’re all lovely women. Some of them don’t know the difference between light-hearted teasing and insults, but they all mean well. I’d just wish they'd think first.

School

So I have to write a Test Accommodations sheet for my test coming up.

Basically I have test in separate room, so I can sign while I take the test. I have two tests that same day.

On my sheet I have the option of “Phone” or “Email” I have told them countless of times to email me when something comes up for change. Can you take a guess at what they decided to do? If you guessed correctly, they called me. Well, I have no idea wtf they said but it seemed urgent. Now I have to wait until my dad gets home so he can tell me what the voicemail said…

Another thing, my Disability Coordinator is fabulous! She faces me and does whatever she can to accommodate me. She actually emails me, not call me.

 But when it comes to the receptionists … oh god it’s a nightmare. Every single time I go in to Student Services to receptionist, they are soo quiet, face away from me. A few times when I was sitting in the waiting area, studying, one of the receptionist was trying to talk to me. I didn’t hear them until someone else told me “Receptionist 1 is trying to talk to you” I look up and I see like an annoyance face. Every single time that receptionist talks to me I don’t hear them at all. I ask to repeat then there’s the whole annoyance/impatient.

The disability services at my new school already hates me. They keep telling me I need certification for an ESA or Service Dog and I told them that I thought the ADA policy said I didn’t. (THERE IS NO SUCH THING AS ESA CERTIFICATION!) They snapped and said “we are *very* ADA compliant, there is a very specific school-wide policy on service dogs”. Then I asked where I could view that policy FOUR times and she eventually said… we don’t have anything. Try calling general counsel, maybe they have a policy”.

Ugh.

Furthermore, she keeps telling me they can’t decide whether my dog is acceptable until they see copies of the training certificate, or at least know which agency it’s coming from (ADA allows people to train their own service dog, but she’s insisting it must come through an agency?) before they make a decision. So she wants me to get a dog through an agency (costs at least $20,000), and then they will decide whether or not I can have a service dog.

UGH.

And today was my third phone call asking for information on the school’s policy, and no one can provide one. I just don’t understand what they want from me.

<!DOCTYPE html> Disability: Self Diagnosis, Stigma, and Not Listening

Storify by Rabbit KMFri, May 22 2015 21:40:13

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Disability: Self Diagnosis, Stigma, and Not Listening

A Twitter conversation between disabled people about our experiences with medical professionals, accommodations, self diagnosis, and invalidation.

  1. Rabbit KM@BathysphereHatReminder that the media reaction to Jerry Seinfeld coming out and saying he thinks he’s autistic was fucking shameful.Thu, May 21 2015 22:56:56ReplyRetweetFavorite
  2. Rabbit KM@BathysphereHatBlaming ableism on self-diagnosis and supposed “fakers” is a way that abled people shift responsibility for ableism away from themselves.Thu, May 21 2015 23:01:27ReplyRetweetFavorite
  3. Rabbit KM@BathysphereHatIt’s a sneaky way to frame ableism as something disabled people do to each other, allowing abled people to ignore the need to change.Thu, May 21 2015 23:05:57ReplyRetweetFavorite
  4. Rabbit KM@BathysphereHatAnd more often than not, they do it under the guise of helping “real” disabled people. We don’t need that kind of “help”.Thu, May 21 2015 23:07:48ReplyRetweetFavorite
  5. Rabbit KM@BathysphereHatGetting a diagnosis doesn’t protect you, by the way. Too many ableds are willing to dismiss disabled people who disagree as misdiagnosed.Thu, May 21 2015 23:09:58ReplyRetweetFavorite
  6. Rabbit KM@BathysphereHatOr to dismiss disabled people’s inconvenient experiences because we’re “too high functioning” or “not disabled enough” to understand.Thu, May 21 2015 23:11:03ReplyRetweetFavorite
  7. Rabbit KM@BathysphereHatMeanwhile, they seem to think that they understand, despite having no first hand experience with disability at all. The logic makes no senseThu, May 21 2015 23:12:12ReplyRetweetFavorite
  8. Cisco Buitron@AskCisco@BathysphereHat And of course if you can prove to them that you’re not “high-functioning” suddenly -that- gets used against you; It’s no-win @BathysphereHat·Thu, May 21 2015 23:13:19ReplyRetweetFavorite
  9. Rabbit KM@BathysphereHatOften, the ability to argue & stand up for ourselves is used as “proof” that we can’t possibly understand, especially re: autism. @AskCiscoThu, May 21 2015 23:14:02ReplyRetweetFavorite
  10. Rabbit KM@BathysphereHatThere’s no way to win w people who think that way. There’s no way to get them to listen, bc all their arguments are focussed on silencing usThu, May 21 2015 23:15:10ReplyRetweetFavorite
  11. Dr.SpiderGethCnsnsus@BootlegGirlIt’s kind of like a family member who couldn’t accept me coming out as trans, also had to second guess an unrelated MH diag @BathysphereHat @BathysphereHat·Thu, May 21 2015 23:15:33ReplyRetweetFavorite
  12. Dr.SpiderGethCnsnsus@BootlegGirlEven though they had acknowledged they were 1) dead wrong about the trans thing And 2) not qualified to treat me at all @BathysphereHat @BathysphereHat·Thu, May 21 2015 23:16:02ReplyRetweetFavorite
  13. Dr.SpiderGethCnsnsus@BootlegGirlBut no, you know someone and that qualifies you to diagnose them. (Self diagnoses are bad though!) @BathysphereHat @BathysphereHat·Thu, May 21 2015 23:16:28ReplyRetweetFavorite
  14. Mono the Unicorn@MonophylosI think there’s some bizarre inverted logic that they, the abled, thus have a clear, dispassionate perspective @BathysphereHat @BootlegGirl @BathysphereHat·Thu, May 21 2015 23:16:31ReplyRetweetFavorite
  15. Cisco Buitron@AskCisco@BathysphereHat “We only speak for the people who can’t protest our speaking for them, because then we get to speak over them w/o recourse.” @BathysphereHat·Thu, May 21 2015 23:16:35ReplyRetweetFavorite
  16. The Demon of Night@4rkain3.@BathysphereHat I have depression. “Have you been diagnosed? No? Then I don’t believe you.” *Gets diagnosed* “Oh, get over it already.” @BathysphereHat·Thu, May 21 2015 23:17:06ReplyRetweetFavorite
  17. Mono the Unicorn@MonophylosThe disabled are not qualified to comment on their own condition because the disability muddles their thinking @BathysphereHat @BootlegGirl @BathysphereHat·Thu, May 21 2015 23:17:06ReplyRetweetFavorite
  18. The Demon of Night@4rkain3.@BathysphereHat “You’ll never get better if you keep acting like this. Just try to be happy and you’ll start to be happy.” @BathysphereHat·Thu, May 21 2015 23:17:53ReplyRetweetFavorite
  19. Rabbit KM@BathysphereHatNot everyone CAN get a diagnosis (even if they have the money/medical access), bc we don’t have a complete knowledge of all disabilities.Thu, May 21 2015 23:19:36ReplyRetweetFavorite
  20. Cisco Buitron@AskCisco@BathysphereHat Or the medical professional you’re seeing has a bias against that disability existing, or you’ve learned coping skills, etc. @BathysphereHat·Thu, May 21 2015 23:22:26ReplyRetweetFavorite
  21. Rabbit KM@BathysphereHatYep. In some areas, it’s p much impossible to get an adult ADHD diagnosis, or even medication when you’ve already been diagnosed. @AskCiscoThu, May 21 2015 23:24:12ReplyRetweetFavorite
  22. Rabbit KM@BathysphereHatAnd if you’re labelled as “drug seeking”, there’s often no recourse. @AskCiscoThu, May 21 2015 23:27:30ReplyRetweetFavorite
  23. Aleks Samoylov@Aleks_S@BathysphereHat Took me 28 years to finally get diagnosed and into therapy. Didn’t make those 28 years of depression/trauma any less real. @BathysphereHat·Thu, May 21 2015 23:22:34ReplyRetweetFavorite
  24. Aleks Samoylov@Aleks_S@BathysphereHat Still would have been completely untreated if it weren’t for the Affordable Healthcare Act. @BathysphereHat·Thu, May 21 2015 23:23:12ReplyRetweetFavorite
  25. Warbling J Basil@warblingjb@BathysphereHat sometimes Drs dismissed as prescription mills are super useful. + one of them first gave me ADD diagnosis, changed my life @BathysphereHat·Thu, May 21 2015 23:33:17ReplyRetweetFavorite
  26. a tiny guppy@crimefish@AskCisco @BathysphereHat The GP I saw at age 10 didn’t believe in psychiatric disorders, so dxed “stress” instead of depression+anxiety. @BathysphereHat·Thu, May 21 2015 23:34:02ReplyRetweetFavorite
  27. a tiny guppy@crimefish@AskCisco @BathysphereHat & I trusted his expert opinion, so didn’t go for a second opinion for 6 more years. -_- @BathysphereHat·Thu, May 21 2015 23:34:57ReplyRetweetFavorite
  28. Rabbit KM@BathysphereHatFor the most part, abled people decide if our needs are valid, if we get accommodations, & if we get a platform to express our experiences.Thu, May 21 2015 23:35:53ReplyRetweetFavorite
  29. Rabbit KM@BathysphereHatIn school, I was repeatedly denied accommodations I needed because I seemed “competent”, even after I started getting disability services.Thu, May 21 2015 23:34:17ReplyRetweetFavorite
  30. Warbling J Basil@warblingjb@BathysphereHat this so much. I told *myself* I couldn’t have ADD because I was “good at school”: standard academic success etc (cont) @BathysphereHat·Thu, May 21 2015 23:40:52ReplyRetweetFavorite
  31. Warbling J Basil@warblingjb@BathysphereHat (2/2) find out later a teacher told my parents I might have it when I was 6, they said no because I was “too smart” @BathysphereHat·Thu, May 21 2015 23:41:46ReplyRetweetFavorite
  32. Warbling J Basil@warblingjb@BathysphereHat & bc I was at a top school, people assumed it wasn’t about how I worked, or stress or anything. it was always something else @BathysphereHat·Thu, May 21 2015 23:50:32ReplyRetweetFavorite
  33. Rabbit KM@BathysphereHatDisabled people are often treated with the least trust of anyone involved in our diagnoses, treatment, services, and accommodations.Thu, May 21 2015 23:39:05ReplyRetweetFavorite
  34. Rabbit KM@BathysphereHatSelf-diagnosis stigma is part of that. It’s got nothing to do with what’s good for us. It’s about abled people’s power over disabled people.Thu, May 21 2015 23:40:09ReplyRetweetFavorite
  35. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb To get the help we need, we have to put on a display of what we know they need to see from us. @BathysphereHat·Thu, May 21 2015 23:57:31ReplyRetweetFavorite
  36. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb Because what they’re expecting isn’t a real picture of disability. :/ @BathysphereHat·Thu, May 21 2015 23:58:04ReplyRetweetFavorite
  37. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb It’s silly that we need to play games to get support, & it makes me feel dishonest at times. @BathysphereHat·Thu, May 21 2015 23:58:57ReplyRetweetFavorite
  38. Rabbit KM@BathysphereHatWe need solidarity between self-diagnosed people and people with diagnoses from Drs. Don’t use self-diagnosis stigma to legitimise yourself.Thu, May 21 2015 23:56:04ReplyRetweetFavorite
  39. Rabbit KM@BathysphereHat1) It won’t work. People find excuses to deny our exps & needs. “I heard that’s really overdiagnosed!” “You don’t SEEM like you have that.”Thu, May 21 2015 23:58:07ReplyRetweetFavorite
  40. Rabbit KM@BathysphereHat2) It panders to ableism & supports the idea that disabled people don’t know our own experiences & can’t speak for ourselves.Thu, May 21 2015 23:59:17ReplyRetweetFavorite
  41. Rabbit KM@BathysphereHat3) It derails conversations about ableism, uniting abled & “real” disabled people against “fakers”, instead of addressing the real issues.Fri, May 22 2015 00:00:52ReplyRetweetFavorite
  42. April Daniels@1aprildaniels@BathysphereHat The first time I read a list of symptoms/behaviors associated with asperger’s, I literally fell out of my chair. @BathysphereHat·Fri, May 22 2015 00:01:46ReplyRetweetFavorite
  43. April Daniels@1aprildaniels@BathysphereHat It was like someone wrote a bullet point explanation of my childhood. Never been “officially” diagnosed by a doctor. @BathysphereHat·Fri, May 22 2015 00:02:13ReplyRetweetFavorite
  44. April Daniels@1aprildaniels@BathysphereHat But the doctors I’ve spoken to about it were, thankfully, willing to take my word for it for the most part. @BathysphereHat·Fri, May 22 2015 00:02:40ReplyRetweetFavorite
  45. April Daniels@1aprildaniels@BathysphereHat Getting accommodations from schools without that magic slip of paper, however, has not been so nice and easy. @BathysphereHat·Fri, May 22 2015 00:03:00ReplyRetweetFavorite
  46. April Daniels@1aprildaniels@BathysphereHat There was also the time my mom offhandedly mentioned that her father (who died before I was born) displayed some behaviors> @BathysphereHat·Fri, May 22 2015 00:07:13ReplyRetweetFavorite
  47. April Daniels@1aprildaniels@BathysphereHat >that I knew to be associated with various ASD stuff. Almost broke down sobbing, had to go talk a walk alone for a bit. @BathysphereHat·Fri, May 22 2015 00:07:49ReplyRetweetFavorite
  48. April Daniels@1aprildaniels@BathysphereHat It had never occurred to anyone else in my family to think why granddad was so obsessive about formal etiquette. @BathysphereHat·Fri, May 22 2015 00:08:26ReplyRetweetFavorite
  49. April Daniels@1aprildaniels@BathysphereHat But I think it’s because formal etiquette was the social system he understood and could use to navigate the world. @BathysphereHat·Fri, May 22 2015 00:08:45ReplyRetweetFavorite
  50. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb To get the help we need, we have to put on a display of what we know they need to see from us. @BathysphereHat·Thu, May 21 2015 23:57:31ReplyRetweetFavorite
  51. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb Because what they’re expecting isn’t a real picture of disability. :/ @BathysphereHat·Thu, May 21 2015 23:58:04ReplyRetweetFavorite
  52. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb It’s silly that we need to play games to get support, & it makes me feel dishonest at times. @BathysphereHat·Thu, May 21 2015 23:58:57ReplyRetweetFavorite
  53. Jeff Fleischmann@Philosocrat@crimefish @BathysphereHat @warblingjb It’s like you have to become actors. Somebody might make a living coaching folks for interviews, etc. @BathysphereHat·Fri, May 22 2015 00:00:43ReplyRetweetFavorite
  54. a tiny guppy@crimefish@Philosocrat @BathysphereHat @warblingjb Exactly! A disabled person having to play an abled person’s flawed concept of a disabled person. @BathysphereHat·Fri, May 22 2015 00:01:46ReplyRetweetFavorite
  55. Rabbit KM@BathysphereHatThe thing is, there’s no “right” act. There’s nothing that will guarantee that we get what we need. @crimefish @Philosocrat @warblingjbFri, May 22 2015 00:07:11ReplyRetweetFavorite
  56. Rabbit KM@BathysphereHatWe have to guess what ppl expect, what their idea of a disabled person is, & it’s not always the same. @crimefish @Philosocrat @warblingjbFri, May 22 2015 00:08:01ReplyRetweetFavorite
  57. Improbable Joe@ImprobableJoe@BathysphereHat @crimefish @Philosocrat @warblingjb I’m always afraid I’ll be too “damaged” and I’ll be committed or suffer consequences @BathysphereHat·Fri, May 22 2015 00:08:50ReplyRetweetFavorite
  58. Rabbit KM@BathysphereHatMe too, especially w mental illness. It’s like we have to maintain this horrible balance. @ImprobableJoe @crimefish @Philosocrat @warblingjbFri, May 22 2015 00:09:51ReplyRetweetFavorite
  59. Improbable Joe@ImprobableJoe@BathysphereHat @crimefish @Philosocrat @warblingjb You have to balance “sick enough to get help” with “not so sick that you scare them” @BathysphereHat·Fri, May 22 2015 00:10:40ReplyRetweetFavorite
  60. Rabbit KM@BathysphereHatPeople say “Tell your doctor everything!” No. Never tell your doctor everything. @ImprobableJoe @crimefish @Philosocrat @warblingjbFri, May 22 2015 00:11:04ReplyRetweetFavorite
  61. Improbable Joe@ImprobableJoe@BathysphereHat @crimefish @Philosocrat @warblingjb Nope, your doctor will lock you up and dope you to oblivion for CYA bullshit @BathysphereHat·Fri, May 22 2015 00:11:38ReplyRetweetFavorite
  62. Rabbit KM@BathysphereHatOr deny you medication because you did LSD that one time. Or they think you might’ve. @ImprobableJoe @crimefish @Philosocrat @warblingjbFri, May 22 2015 00:12:45ReplyRetweetFavorite
  63. Improbable Joe@ImprobableJoe@BathysphereHat @crimefish @Philosocrat @warblingjb Or you mention that you drink alcohol, so they ignore your problem and suggest rehab @BathysphereHat·Fri, May 22 2015 00:13:32ReplyRetweetFavorite
  64. Warbling J Basil@warblingjb@BathysphereHat tell your doctor everything if and only if you don’t have a serious problem, or if you need to be committed @BathysphereHat·Fri, May 22 2015 00:12:10ReplyRetweetFavorite
  65. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb I had an A&E doctor get suspicious & deny treatment (& pain relief) because I > @BathysphereHat·Fri, May 22 2015 00:11:51ReplyRetweetFavorite
  66. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb > knew too much about an acute condition… I’d had it before. So I knew. @BathysphereHat·Fri, May 22 2015 00:12:25ReplyRetweetFavorite
  67. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb Listing textbook symptoms in a pathetic voice worked better than naming the > @BathysphereHat·Fri, May 22 2015 00:13:51ReplyRetweetFavorite
  68. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb > illness (pancreatitis!) & the treatment. @BathysphereHat·Fri, May 22 2015 00:14:14ReplyRetweetFavorite
  69. Rabbit KM@BathysphereHatThat’s one of the scariest “symptoms” of Munchausen & drug seeking. @crimefish @ImprobableJoe @Philosocrat @warblingjbFri, May 22 2015 00:14:14ReplyRetweetFavorite
  70. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb It’s also a symptom of having recurring conditions & access to google! @BathysphereHat·Fri, May 22 2015 00:15:24ReplyRetweetFavorite
  71. Rabbit KM@BathysphereHatIt seriously makes me wonder how much Munchausen is even a real thing. @crimefish @ImprobableJoe @Philosocrat @warblingjbFri, May 22 2015 00:16:01ReplyRetweetFavorite
  72. Rabbit KM@BathysphereHatLike ok, there are cases when people specifically get caught poisoning themselves. @crimefish @ImprobableJoe @Philosocrat @warblingjbFri, May 22 2015 00:16:21ReplyRetweetFavorite
  73. Rabbit KM@BathysphereHat…but when that’s not happening or there’s no evidence, I’m really skeptical. @crimefish @ImprobableJoe @Philosocrat @warblingjbFri, May 22 2015 00:17:05ReplyRetweetFavorite
  74. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb I don’t get “drug seeking"either tbh. Of course I’m seeking drugs, why else would I> @BathysphereHat·Fri, May 22 2015 00:17:05ReplyRetweetFavorite
  75. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb Sit in Accident&Emergency for hours? To get a hug & a lollipop? @BathysphereHat·Fri, May 22 2015 00:17:28ReplyRetweetFavorite
  76. Rabbit KM@BathysphereHatYep. It makes it v hard to ask for dosage increases & request prescriptions that you NEED @crimefish @ImprobableJoe @Philosocrat @warblingjbFri, May 22 2015 00:18:23ReplyRetweetFavorite
  77. a tiny guppy@crimefish@BathysphereHat @ImprobableJoe @Philosocrat @warblingjb I don’t understand why they’d assume Munchausen when I have DISEASES in my notes. @BathysphereHat·Fri, May 22 2015 00:18:46ReplyRetweetFavorite
  78. Warbling J Basil@warblingjb@BathysphereHat @crimefish @ImprobableJoe @Philosocrat ugh so much. I felt like I was doing sth wrong when I asked my doc for a higher dose @BathysphereHat·Fri, May 22 2015 00:19:02ReplyRetweetFavorite
  79. Warbling J Basil@warblingjb@BathysphereHat @crimefish @ImprobableJoe @Philosocrat when it was because my current dose wasn’t working. @BathysphereHat·Fri, May 22 2015 00:19:23ReplyRetweetFavorite
  80. Rabbit KM@BathysphereHatAlmost every time I get a new psych, they say "You don’t need that much Adderall” > @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:27:27ReplyRetweetFavorite
  81. Rabbit KM@BathysphereHat> even though my dose is well within the therapeutic norm. I say “Yes I do, this is the > @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:28:02ReplyRetweetFavorite
  82. Rabbit KM@BathysphereHat>dose that works. They reduce it every time I switch, doesn’t work, & we go back to this” @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:29:32ReplyRetweetFavorite
  83. Rabbit KM@BathysphereHat> “…even though I tell them that this will happen every time.” @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:29:52ReplyRetweetFavorite
  84. Rabbit KM@BathysphereHatThen they decrease the dose anyway, and exactly what I just described happens. @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:30:24ReplyRetweetFavorite
  85. Rabbit KM@BathysphereHatAnd every goddamn time, the psych is like “Wow, who would’ve guessed?” I WOULD’VE. I DID. @warblingjb @crimefish @ImprobableJoe @PhilosocratFri, May 22 2015 00:30:57ReplyRetweetFavorite
  86. a tiny guppy@crimefish@ImprobableJoe @BathysphereHat @Philosocrat @warblingjb I suspect half the time they know you’re not a “drug seeker”, & still they resist > @BathysphereHat·Fri, May 22 2015 00:27:53ReplyRetweetFavorite
  87. a tiny guppy@crimefish@ImprobableJoe @BathysphereHat @Philosocrat @warblingjb > because they’re hurt that you know what you need & don’t need their expert opinion @BathysphereHat·Fri, May 22 2015 00:28:19ReplyRetweetFavorite
  88. a tiny guppy@crimefish@ImprobableJoe @BathysphereHat @Philosocrat @warblingjb > Like it bruises their ego & they need to maintain their power trip by denying. @BathysphereHat·Fri, May 22 2015 00:29:11ReplyRetweetFavorite
  89. a tiny guppy@crimefish@BathysphereHat @warblingjb @ImprobableJoe @Philosocrat Exact same thing happens whenever I get admitted. They take my amitriptyline away > @BathysphereHat·Fri, May 22 2015 00:32:11ReplyRetweetFavorite
  90. a tiny guppy@crimefish@BathysphereHat @warblingjb @ImprobableJoe @Philosocrat > & are surprised when I can’t sleep a wink without it, even though I warned them. @BathysphereHat·Fri, May 22 2015 00:32:37ReplyRetweetFavorite
  91. Rabbit KM@BathysphereHatThey did that to me with ambien at the hospital. They put me back on trazodone. @crimefish @warblingjb @ImprobableJoe @PhilosocratFri, May 22 2015 00:34:31ReplyRetweetFavorite
  92. Rabbit KM@BathysphereHatTrazodone makes my dizziness & fainting MUCH worse, & their solution was “be careful” @crimefish @warblingjb @ImprobableJoe @PhilosocratFri, May 22 2015 00:35:47ReplyRetweetFavorite
  93. Rabbit KM@BathysphereHatI have no history of abusing medication, but they took away ambien because it’s abusable. @crimefish @warblingjb @ImprobableJoe @PhilosocratFri, May 22 2015 00:36:23ReplyRetweetFavorite
  94. Rabbit KM@BathysphereHatThey were like “You don’t need to walk in the hospital.” @crimefish @warblingjb @ImprobableJoe @PhilosocratFri, May 22 2015 00:36:38ReplyRetweetFavorite
  95. Rabbit KM@BathysphereHatWhen I got out, my psych insisted I stay on trazodone & got mad when I wouldn’t take it. @crimefish @warblingjb @ImprobableJoe @PhilosocratFri, May 22 2015 00:37:55ReplyRetweetFavorite

Every time I get an email notification I rush to read it, hoping that it’ll be from my case worker at Services for the Blind.  She is supposed to be back in the office today but who am I kidding, my phone calls and emails aren’t going to be answered, these people work until noon and then peace out for the rest of the afternoon.  I think I’m going to end up calling her boss again if I don’t here from her by tomorrow.

Meeting with the Disability Services Lady

I was able to schedule a meeting with the woman who approved my housing accommodation to discuss my disability services. I’m quite nervous but I’m definitely not going to hide it around her. I’m going to be as open as possible about my anxiety over moving and living on my own considering my conditions are scary on their own. Luckily, I scheduled it before orientation, that way we can talk about how I’m going to register for classes. I’m kinda excited but nervous. If any of you have suggestions, whether you have been in my place or not, I would gladly take them.

3

I got tired of all of those posts circulating FaceBook that blame the poor for how much is deducted from their paychecks in taxes instead of the rich who barely pay anything at all (an effective tax rate of 6%).

You can probably tell which one I have the most experience with. The rest was briefly researched (moreso than anyone reblogging those posts have bothered to do).

If anything is wrong, feel free to correct me.

Dragon Con supports equal-access and provides on-site assistance for anyone who has a disability. Please be sure to stop by the Disability Services table in the Sheraton if you need any assistance.

After attending Dragon Con for the first time last year (and my first con in quite a few years), I have been shocked by the dismal showing or even outright lack of disability services at other events. That’s how nice D*C’s services are, especially for such a huge event.

If you’re able, you can go through the regular registration line to pick up your con badge and then hit DS for your accommodations afterward, but if for whatever reason you’re not able to go through the crowds, long lines, and partial outdoor waiting (depending on when you get there) of registration, you can instead head inside to the bottom floor of the Sheraton and directly to Disability Services. If any staff tries to stop you for passing the line or going inside without a badge (no one even tried to hassle us last year, but just in case) let them know that that is where you are going and they’ll send you on your merry way, often with more precise directions of where to find DS. Remember to bring your postcard with you as DS will be processing & printing up your badge if you haven’t picked it up at the big registration line.

Once there, take a number and a seat, if needed (remember that seating is limited & this room will inherently have a much higher concentration of fellow disabled people, so if standing isn’t a problem for you or you brought your own, try to leave chairs for those who do need them), and a staff member will come over to discuss your accommodations with you when they get to your number.

Now, I was nervous going into this the first time, but don’t worry: this is not meant to be a high-stress ‘prove how disabled you are’ interaction. They didn’t ask what illnesses I have or demand medical proof, which is a big deal for someone like me (young, relatively healthy-looking, with an invisible illness & invisible-unless-I-get-my-cane-out-or-am-actively-fainting disability) - they just ask what reasonable accommodations you need in order to enjoy the con. Depending on your particular disabilities and needs, they’ll apply a sticker to the front of your badge for other staff to see, along with a sticker on the back with any important information that you wish to include, such as allergies or diagnosis for emergency responders or an emergency contact person.

The badge stickers are important and are one of my favorite parts of their system, personally: at one point last year, I had a free forty-five minutes to people watch while I waited to meet up with friends, so I hobbled over to the disability reserved seats that can be found against the wall throughout much of Dragon Con. As I sat there, a staff member would periodically come by and ask everyone in the chairs to hold up their badges so they could see our accommodation sticker. Everyone without the necessary sticker (because, yes, other people obviously still sit in the disabled seats, despite the prominent 'reserved’ signs & handicapped symbols) were asked to move along or at least to sit on the floor, so that the chairs could be kept open for those who need them. Fifteen minutes later, the seats were starting to fill up again, and a staff member came by once more to clear them out. Rinse, repeat. I never so much as got a second glance from the staff, let alone a challenge as to my disability status - all they needed to see was that I’d been cleared by DS already and had every right to sit there :)

Read more on DCDS’s official wiki, such as where to rent electric scooters, more info on registration, how seating for large events is handled, etc.

Contact Dragon Con Disability Services at disabilityservices@dragoncon.org