Trouble with Disability Services?
Aug. 21st, 2012 04:17 pm![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png)
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After running across a couple of frankly horrifying stories of people attempting to deal with Disability Services for this year's Con, I thought it was time to reach out to the broader community and see if this is a trend that other people have noticed, or if it's just a few isolated incidents that could be resolved by having the bright light of the community shined on them.
As a bit of background, I live with several invisible illnesses that have progressed over the last decade to the point where I am no longer able to work, need help with household chores, etc. This is the first year I'll be using Disability Services at DragonCon, after years of making-do at Con, skipping large events, and trying to get by on the life adjustments I use to cope at home. And last year I missed almost all of Sunday because of it, so this year I'm forcing myself to suck up my pride and plan to make Disability Services my first stop when I get to DragonCon.
Knowing that I'm going to be using DS for the first time this year, I've kept an eye out for mentions of it online. First I ran across this worrying story of an attendee whose father has been hospitalized for diabetes being told that Disability Services can't do anything for him, as hospitalization-level diabetes isn't a "real" disability, and they aren't there to make anyone comfortable. Next I happened to meet someone on Tumblr who is chronically ill to the point of needing assistance to be able to manage the con, but has been told that her assistant's first-time-going-to-a-con girlfriend is on her own as DS can't allow two companions to sit with a woman who needs assistance -- and told again, this time by the DS director.
Then I worked my way through the Disability Services wiki and found myself scratching my head at the tone. This is a department whose sole purpose is to provide help and services to those who would otherwise be prevented from going to DragonCon, but there's more in there about all the things that DS can't or won't do to help you. Some sections, like the bits about being your own advocate and the frequent admonisions to arrive early (which, of course, is just so easy for anyone dealing with a disability at DragonCon) are flat out rude, and seem to willfully ignore the social and emotional barriers many people dealing with long-term illness and disability often face on top of the physical barriers (ie, sometimes being forced to discuss your illness/disability with a total stranger is as detremental as being forced to climb that flight of stairs). There's a tone of "stupid you for getting sick and/or injured, now you're stuck with whatever scraps we feel like throwing your way, be thankful you get anything at all" that seems to me to leap out from every page.
I get that Disability Services needs to have rules in place to make sure people aren't abusing accommodations they don't genuinely need. I get that anyone who uses DS needs to be their own advocate -- but trust me when I say that anyone who has gotten to the point of needing Disability Services is more than familiar with the trying, tiring, soul-destroying, never-ending task of being one's own advocate. What I don't understand is the attitude. What I don't understand is saying that a man who has been hospitalized for diabetes doesn't qualify for a teeny tiny sticker that would make an event he paid to attend marginally less painful. What I don't understand is the complete and utter inflexibility to allow even one extra companion, on a case by case basis. What are they going to do when a disabled woman wants to keep both her husband and their child with her in line? What are they going to do when someone they could have helped but turned away passes out in line and seriously complicates an already life-altering illness?
Guys, help me out here? Are these a few isolated incidents that need to be escalated up the chain of command? Or is the attitude and tone I've witnessed again and again any time I run across Disability Services the attitude and tone I should expect to greet me at my first stop at DragonCon? And if that's the case, what can be done to fix it?
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Date: 2012-08-22 02:12 am (UTC)no subject
Date: 2012-08-22 02:47 am (UTC)The disability office is not comprised of doctors and is therefore limited when it comes to assessment. Diabetes is not a disability because not everyone with diabetes is disabled. The disability is the symptoms - not the disease. If the disability is in any way unclear or questionable - just bring a doctors note stating your needs. I can't imagine that that would not be sufficient.
As for the tone, it's the same one that is used by social security disability. Right or wrong, it's pretty standard. I wouldn't read anything into it.
I would also think that a child would be viewed as someone who needs supervision rather than a companion & would be allowed to stay with the parent. When it comes to ADA law, there are no exceptions. That's the whole point - equal treatment and opportunity. If they set a standard and then broke it, that would set them up for legal action from others who did not get that same treatment.
If you have any doubts, just contact them ahead of time to make sure you won't have any unexpected issues.
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Date: 2012-08-22 04:35 am (UTC)no subject
Date: 2012-08-22 04:38 am (UTC)no subject
Date: 2012-08-22 04:58 am (UTC)no subject
Date: 2012-08-22 11:14 pm (UTC)(no subject)
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Date: 2012-08-22 05:58 am (UTC)My disability isn't "visible" (i.e.: needing a cane or a wheelchair) unless I'm limping but I'm still in constant discomfort and pain, the degree varying depending how long I'm on my feet. I'm shy about using disabled services even thought I probably need it.
BUT, that said, a previous friend of mine used disabled services for two years running. She never had issue with them.
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Date: 2012-08-22 06:52 am (UTC)no subject
Date: 2012-08-22 01:54 pm (UTC)I know that this doesn't discount other people's bad experiences, but I just wanted to point out that a bad experience isn't guaranteed. (Oh, and we stay in the Marriott Marquis and do lots of stuff at the Westin, so most of our experience with the elevators are in those two hotels. I hear that the Hyatt elevators are miserable whether or not you're in a wheelchair.)
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Date: 2012-08-22 11:48 am (UTC)At Con there is a limit to 1 assistant/helper. Does that means if Mom, Dad and child show up and one has DS sticker - I won't let them sit together? Most likey I will. That depends on how they act/talk to the people at the door. I've had my foot purposely ran over by someone on a scooter while talking rudely to me. Will I show them extra courtesy - probably not. Will I let a person with a DS sticker in with 10 additional friend - probably not.
As for lines - yes get there early like everyone one else. The DS sticker does not guarantee a seat. The Con will do its best to accommodate anyone with a DS sticker. If the room holds 2000 people and there is a line of 5000 people already, you cannot expect to be granted entrance if you show up when the doors open.
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Date: 2012-08-22 12:24 pm (UTC)no subject
Date: 2012-08-22 01:44 pm (UTC)I agree on the tone of the wiki. Http://dragonconds.wikia.com/wiki/Seat_in_Line/End_of_Row_Accommodations page is particularly grating to me.
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Date: 2012-08-22 04:18 pm (UTC)My ex wanted to use disability services to bypass the lines when there was a 2 hour wait. He was also really to fake a disability to try and get good seating. There is a real reason he is my ex.
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Date: 2012-08-22 03:45 pm (UTC)no subject
Date: 2012-08-22 03:54 pm (UTC)no subject
Date: 2012-08-22 03:57 pm (UTC)The only time she had a probem was with one of the volunteers who was seating people from the DS waiting area. She was very rude to everyone, rushing poeple who could not move quickly, and being very condescending. I know she was reported to the director by the track director who was in the room at the time.
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Date: 2012-08-22 10:04 pm (UTC)There are certain questions that I see over and over again, for these I have ‘canned’ answers that I use to respond. I have been known to misunderstand a question on occasion, I make no claims to perfection.
Based on this:
[quote]First I ran across this worrying story of an attendee whose father has been hospitalized for diabetes being told that Disability Services can't do anything for him, as hospitalization-level diabetes isn't a "real" disability, and they [u]aren't there to make anyone comfortable.[/u] [/quote]
…I can tell you that the question I was answering was parsed into “Here are my medical details, do I have a disability?”
And almost word for word (possibly changing pronouns), the reply would have been:
[quote]A disability is legally defined as a physical or mental impairment that substantially limits one or more major life activities . We are not here just to make people more comfortable (if that were the case all 50000 people would go thru our department), but if you have a disability, then we are here to help you. I can't tell you if you have a disability or not, you are the one who makes that call. I, myself have several problems in my legs; chronic compartment syndrome, tarsal tunnel, achilles tendonitis, plantar fasciitis...While long periods of standing or walking cause me pain, I do not consider myself to have a disability. "To rise to the level of a disability, an impairment must significantly restrict an individual's major life activities. Impairments that result in only mild limitations are not disabilities."
If you verify that you have a disability, we will serve you. Come to our table in the Sheraton, just outside on-site registration.
Oh, and by the way, pregnancy is NOT a disability under the ADA, sorry. [/quote]
At no time did I/do I/will I tell someone that they do not have a ‘real’ disability. I say, paraphrasing, “here is the legal definition of disability, you are the only one who can determine if you meet it or not. If you meet it, come to DS.”
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Date: 2012-08-22 11:07 pm (UTC)In the first case of the teenager who was asking for help on her father's behalf, I would imagine that's the form letter she got, since she mentioned the rude tone, the "we aren't here to make people comfortable, if that was the case we'd have all 50k attendees going through our department" bit, and the "that doesn't sound much worse than my own leg problems, stop whining like a baby" bit. What was clearly missed by whomever hit Send on that form letter, you or your staff, was that this is a man who has been hospitalized for his diabetes. A little extra time and reading comprehension to help a teenager figure out what can be done to help her father physically manage a con he paid to attend doesn't seem like an unreasonable request.
Look, I get that your department has the added pressure of legal guidelines to deal with. But this tone, right here? This tone that I've seen in the wiki you've linked in other posts, that I've seen filtered through other people's bad experiences? This is what has me worried that I'll start off my DragonCon in tears at the Disability Services desk. So thanks ever so much for assuaging my fears.
Disability is a fluid thing. There are the legalities of the ADA, yes, but people rarely fall into neat little boxes of "disabled" and "not disabled". I look healthy, but I'm running out of "major life activities" that aren't completely ruled out or severely altered by the illnesses I live with. I don't have a handicapped parking badge, as any day I'd really need to use it I can't physically make it out of the house anyway, much less drive. I had to quit working 20 months ago, after clinging to part time contract work for nearly a decade. Every single aspect of my life has been impacted, altered, and destroyed by this illness.
But am I "disabled"? Not only is that a rather personal question, one that I don't discuss with anyone besides by doctors and my immediate family, it's also a rather existential question. I'm still me, in a body that can physically do less and less with each passing year, and I find myself resistant to labels like that, and I doubt I'm the only person living with illness and limitations who feels that way. If your own leg problems (which, forgive me, honestly seem to be included in the form letter to trivialize other's ailments and make them think twice about visiting Disability Services) don't render you "disabled" in your opinion, then that's fine. My illness has gotten to the point where I can either ask for help or not be able to physically handle DragonCon at all, and be forced to stay home from the one event I look forward to all year. Does that fit the legal definition of "disabled"? Does it matter??
Last year at DragonCon, I was quite nearly physically incapable of leaving my hotel room on Sunday, because I forced myself to stand in lines like a "normal" person, and ended up in too much pain and too exhausted to put clothing on by Sunday. So this year I was hoping that you and your staff could find it in the kindness of your hearts to give me a sticker that says I don't have to stand. That's all. Because I love this con, I paid to go to this con, and I can't stand the idea of my illness stealing yet one more thing I love from me.
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Date: 2012-08-22 10:52 pm (UTC)Me, again. Director of Disability Services
“Next I happened to meet someone on Tumblr who is chronically ill to the point of needing assistance to be able to manage the con, but has been told that her assistant's first-time-going-to-a-con girlfriend is on her own as DS can't allow two companions to sit with a woman who needs assistance -- and told again, this time by the DS director. “
There is a post (I think it was here on LJ, fairly recently, but I can’t find it now) where a lady tells about how she was the first one in line, at 6am, to get a good seat for a panel where she would see her favoritest ever star (fangirl squeee!) Okay I might be taking some dramatic license there, but she was in line at 6 and waited HOURS to see a show. At some point shortly before the doors opened, she noticed the disability line. She saw what she believe was one person in a wheelchair going in thru the disability line with 10 non-disabled friends. Now, while personally I suspect that at least some of those 10 were people with ‘invisible’ disabilities, I really have no choice but to take her story at face value. By the time our early bird fangirl, first in the non-DS line, got to a seat, she was on the 6th row. The first panels usually start at 10, so at a minimum, she waited 4 hours to see her heartthrob… for a seat on the 6th row.
Now, main programming is one of the few areas where being disabled gets you some ‘special treatment,’ strictly as a byproduct of security’s concern for the safety of all con-goers, but still… Over 600 people went through disability services last year, it has increased every year since I started coming to DragonCon. While 600 people are not a lot compared to the total number of people that come to DC, it is still a lot of people. Now double it. That allows for one companion for each person with a disability. Yes, one more person added to that 1200 won’t make a huge impact, but the precedent set will. Based on the fangirl’s story those numbers do make a huge impact on other people at the Con. (Just as an aside, minor children are never separated from families, they are an exception to the ‘one companion’ rule)
That accounts for companions. A companion (we call them minions) is a friend you want to stay with you, to enjoy the Con together. As with everything we do, if you can explain to us why you NEED a policy modified, we do it. That is what the ADA is all about, modifying policies, practices, and procedures so that people with disabilities have equal access to the places they want to go and things they want to do.
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Date: 2012-08-22 11:33 pm (UTC)That's a great policy in theory, but I'm not sure you're really following through with it in practice. "A companion (we call them minions) is a friend you want to stay with you, to enjoy the Con together." So what about when a companion isn't just a friend, but is a medical necessity? Must a person be forced to choose between having a nurse with them and having a friend with them? If any of these things can be re-evaluated in a case-by-case basis, then I urge you to re-evaluate this case (in private, of course). You're asking someone dealing with severe illness to either manage her illness on her own in the stressful atmosphere of DragonCon (painful, difficult if not impossible) or to separate her minion from his girlfriend and leave the girlfriend to roam DragonCon alone for her very first con (rude, potentially dangerous). All she wants to do is be allowed to sit with her friends, like everyone else. I urge you to take a look at this specific case again and see if there's anything that can be done. (And of course, I don't expect to hear back about it, just, please, consider it.)
On the topic of the fangirl who claims that 10 minions were allowed in with one disabled attendee, I call not only prejudice but BS. Prejudice in that yes, many (if not most) disabilities, illnesses, and physical limitations are invisible, and the able-bodied young woman who was physically capable of getting up and in line by 6am is probably spectacularly ignorant of invisible disabilities. I'm sure she'd sneer at me, who looks healthy but really isn't. It's not my job or anyone else's job to fit into the prejudiced ableist's stereotype of "disabled".
And BS in that it makes absolutely zero sense. Now I haven't used Disability Services yet, but aren't the "get a chair in line" stickers the same as the "get seated in an aisle seat" stickers? Wouldn't that mean that anyone in the disabled line for the panel with mobility limitations would be seated to the sides of the room, not in the first five rows? Aren't the first rows usually used for those with sight or hearing limitations, and for those with service dogs? So what that able-bodied young woman was really complaining about was that anyone who has a service dog or who needed to see a sign language interpreter or who needed to read lips or who wouldn't be able to hear from the back of the room or who wouldn't be able to see the panel unless they're in the first few rows got seated before she did. Aren't those exact the people that should have the first few rows reserved for them?
So given that she was probably a) mistaken about the number of invisible illnesses/disabilities present in the line and b) confused about what the first few rows in a large room should be used for and c) exaggerating to get your attention, it doesn't seem to me like the sort of story you should base policy changes on. If anything, it'd call for better training for the staff members in charge of seating for large rooms. Instead, you chose to take a clearly exaggerated story at face value and use that to further limit the number of minions the disabled person is allowed to keep with them. At some point, you're just punishing the people who genuinely need your help for the prejudices of the able-bodied attendees who don't need your help.
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Date: 2012-08-23 12:25 am (UTC)no subject
Date: 2012-08-23 02:36 am (UTC)I am very much disabled. I pretty much have something wrong with every system. I'm wheelchair-bound, and due to that and many other problems, I can't go to the con at all without assistance. I know that Disability Services has a lot to deal with and works hard, so I try to handle things with as little impact to DS as possible. For me, that means asking for the accommodations I need, and then relying on a friend to help me. (Every year, I work out a deal with a friend - they help me, I pay for their ticket. Everyone wins.)
This year, my friend's girlfriend is coming, too, but this one minion only rule means that there is no way that all three of us can enjoy the con together. Either they go off and I lose the help that I need, or I get the help and that means that his girlfriend is pretty much on her own (which would not be good, as she's a first-timer).
If I lose the use of my friend, I can't go. I won't be able to physically do it.
I don't want these problems, or to be a pain, or to skip lines, or take advantage of DS in ANY way. If you need to hear the list of things wrong with me, or to bring my disabled parking tag for proof, I'll do it. I actually do understand why the one minion rule is there, but like any other policy, I do think there should be case-by-case exceptions every once in a while.
All I want is to enjoy the con with my friends. That's all.
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Date: 2012-08-23 10:11 am (UTC)no subject
Date: 2012-08-23 10:35 am (UTC)Give me suggestions on how you want the language changed. Oh, and show me those spelling errors too. (Found one so far, I have my staff reading it for me too.)
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Date: 2012-08-23 11:08 pm (UTC)I've used DS in the past and not had a problem with it, but I think the issue you're running into with the wiki is the informal tone is perhaps a bit too blunt for some people. I understand the realistic attitude you were trying to portray, but I'm not sure it entirely comes across the way you intended.
I do copywriting for a living and, unfortunately, though I don't have time to spare before the convention this year, I would be happy to volunteer to rewrite sections of the wiki post-con to help make them more palatable. I would, of course, send all copy to you to be vetted prior to posting.
If you'd like to contact me about this, I can be reached at inkfusionlit@gmail.com.
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Date: 2012-08-23 06:28 pm (UTC)no subject
Date: 2012-08-23 07:29 pm (UTC)(no subject)
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Date: 2012-08-23 11:21 pm (UTC)My only complaint from last year was the closed door next to the bottom of the stairs at the Hyatt's back entrance. Obviously I can't climb the stairs and the con security person standing there told me I'd have to walk around to the front of the hotel or go back into the Marriott and use the sky bridge. For someone with mobility issues and limited stamina, either of those options were not particularly helpful for someone just trying to cross the street from one hotel to the other. I would really appreciate that door being opened again, especially if they're going to have security posted there, checking for the disability sticker like they did in previous years.
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Date: 2012-08-24 12:56 am (UTC)cherie
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Date: 2012-08-24 04:15 pm (UTC)I was able to sit down there, after taking a number, and wait for my number to be called. I wasn't familiar with the process, so the question-asking part was a little clunky for me, but what they really wanted to know was what I could not do. Not so much interested in what my chiro said or lengthy descriptions, just what my limitations were. They went and got my badge for me and I got a sticker on my badge that said Seat in Line. I didn't actually attend any panels, so I didn't use it, but what I really needed help with was standing in that hours-long badge line, and that's what I got help with.
I'm going to give the regular line a try this year and see if it's not too long a wait, but if I can't handle it, I know that I'll be able to go to DS and that I'll be treated with professionalism and courtesy, just like last year.
:o)
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Date: 2012-08-26 04:40 pm (UTC)no subject
Date: 2012-08-25 12:13 am (UTC)Just as a bit of background, When I first saw the original post here, I immediately opened discussion with my core staff. As discussions were happening here, we were discussing over there. I know what 'tone' was in my head as I was writing, and its the same one I 'hear' when reading it. It was certainly never intended to be rude or condescending. Obviously, though, I could not objectively review my own writing. So I wanted other eyes to give it the once over.
And I check my email this morning, and found the Self Advocacy page had been edited... And when I got home from work today, I was notified that several other pages had been edited to.
I love my staff....
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Date: 2012-08-25 02:55 am (UTC)Since glasscannon asked for experiences, I'll tell you about my friend and business partner. He's past legally blind and photophobic. In bright sunlight he is essentially blind and in serious eye pain. (So standing in those outside lines really sucks for him if it is sunny) He carries a cane if alone but prefers to have a helper in large crowds. He wears sunglasses 24/7 due to his photophobia and gets constant hassles for that, especially at night - unless he has his cane (sometimes even still) Less so at D*C than most places, thankfully. We took him to the DS area last year for his first DC. Everyone was very nice. He was asked questions and given a "proximity - 50 feet" stamp/sticker thingie - which confused me.
I get that front row seating is coveted, I get that people sometimes get upset when others who weren't first in line get placed on that front row. I am sure lots of people try to use moderate visual impairment to get choice seating. (The proximity page on the wiki is pretty harsh, most likely because this has been abused) But there should be another level of proximity for the more severely visually impaired. Being visually impaired to his extent and being within *50 feet* of a screen that is already up in the air is not going to help him. He might as well be in the back of the room. The only chance he has to get anything out of a panel is to be on that front row or *maybe* second row center.
I completely concur with only having one companion with him. But if anyone has a legitimate need to request to be as close as possible, it would be someone like him. He utilizes the accommodation very rarely. He used it only one time last year and was lucky enough to have a nice staffer who understood his issue and he got a location where he could see. I'd love for him to be able to attend a few more panels without having to argue with someone about what he can and cannot see. Then it becomes a stressful, and yes, shameful experience and he would probably just leave rather than make a scene. Please consider some options for people like Cameron. Cherie, if you may can help him this year - please let me know.
Ironically enough, we had far more of an issue with a "fellow" disabled person than anyone else at the con. A woman with a service animal was extraordinarily rude to my friend, making snarky comments to her companion about how he didn't "deserve" to be up in the front and he should be back by the screens. I restrained myself from engaging her but it was very difficult. I didn't want him to get kicked out of the room on my account. But...seriously? I think he'd give up all the special seating in the world to have normal sight like so many of us do.
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Date: 2012-08-25 03:49 am (UTC)cherie
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