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DragonCon
Trouble with Disability Services? 
21st-Aug-2012 04:17 pm
pixie
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?

Comments 
22nd-Aug-2012 02:12 am (UTC)
That's very weird. I used Disability Services for the first time ever last year, due to problems with my hips and my husband's fibro. I had nothing but a good experience. I used them for registration, because I can't do the long line in the heat (nor could hubby), and it was the most simple, painless process I've been through. I walked up, took a number, when my number was called, they asked me a few questions, asked my husband a few questions, and then gave us more accommodation than we were asking for. They then ran our registration, brought us our badges, stamped our allowances on the back, and that was it. We used the "seat in line" accommodation maybe twice, but that's because we mostly go to small panels. I've found them to be nothing but helpful and professional. I've never read the wiki, so that is news to me, nor had I heard any real horror stories about them. If anything, just the opposite, and it was what convinced me to let them help me last year.
22nd-Aug-2012 02:47 am (UTC)
I haven't dealt with D*C's disability services.. however, there is a difference between a "disability" and an "illness". It's about impact. ADA is much broader than federal disability, but it doesn't map out exactly what does and does not qualify. When ADA is applied on the job, you need a note from your doctor. This note doesn't need to say what's wrong.. only state your limitations and needs.

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.
22nd-Aug-2012 04:35 am (UTC)
First of all, at con, DS has always been very good to me (I have MS, Fibro, CFS, IBS, IC, ect way more) and most of that is hidden illness, but I can't stand for long, I have to pee when i have to pee, I can't be in heat at all, etc. They by ADA laws can't ask you what you are suffering but only symptoms. Yet when I go I write the whole slew down till I run out of room and they enter that in their computers and it's already there for the next year (I missed most my first year at Dcon because of IC). Second, I talked with the first poster you referred to and got her situation settled. But my advise is just go, they'll ask if you need end of row seating and with hidden illnesses sometime that is best since you may have to leave early, and then write your illnesses on the back, they'll store then and you'll have it all set for next year.
22nd-Aug-2012 04:38 am (UTC)
I PMed you
22nd-Aug-2012 04:58 am (UTC)
This is the first year that I've contacted Disability Services. This will be my fifth year in a row attending with my sister. We began going after she was diagnosed with cancer. This year, she is really slowed down because of her illness and we were hoping to be able to avoid having to wait in long lines because she just can't physically do it anymore. The tone I got from the wiki, was too bad you are disabled, you get no real special treatment. This is really disappointing. I explained her situation to someone with Disability Services via email and I was just referred back to the wiki.
22nd-Aug-2012 11:14 pm (UTC)
You can still go to disability services and explain that she cannot wait in long lines due to physical limitations. Don't always base your ideas and judgements on faceless emails.
22nd-Aug-2012 05:58 am (UTC)
I've considered using disability services this year. I have issues with my foot that keep me from walking/standing for prolonged periods of time - I've basically partially torn a tendon in my foot and have inserts to help correct the issue.

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.
22nd-Aug-2012 06:52 am (UTC)
One of the friends I go to con with needs a wheelchair and he has always expressed that he thought the con did well. I can also say that he has often had 2 or 3 people sit with him. They don't guarantee more than one companion seat but they have always been very accommodating in practice. Not relating to the official services, but the biggest issue we've encountered is a very rude and entitled attitude from other attendees in relation to the elevator. Many people who don't actually need to use the elevator do and we have had to wait up to an hour on a Saturday night to go up two floors from the ballrooms to the exit. I never ride the elevator with him so I don't take up space (the escalators are perfectly acceptable) but I do wait until he gets on and the way people avoid eye contact and refuse to shift around...yeah...
22nd-Aug-2012 01:54 pm (UTC)
I know a lot of people have had problems getting on elevators with wheelchairs, but I must say that my wheelchair bound friend and I have always had a reasonable time. Usually, we would join the elevator line and when the folks who were in line before us had all gotten onto elevators we loudly announce that it's our turn to everyone else. Admittedly, sometimes we still had to wait for several other elevators until one had enough space for us, but by that time we find that most of the folks waiting for elevators with us are all on our side and helping us to get maneuvered over and in to whichever one we can fit into. We've even had people on the elevators voluntarily get out to make room for the wheelchair!

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.)
22nd-Aug-2012 11:48 am (UTC)
Although I am not disabled, I deal with Disability Services each year as a volunteer who works the equipment and manages some of the rooms. I can't comment as to how they determine whole gets a sticker or not but DS is normally a great group. I would stop there first.

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.
22nd-Aug-2012 12:24 pm (UTC)
I have used DS all but once when I attended. I don't have a diagnosed disability but I'm overweight and have back and knee issues. I've never had a problem getting a sticker. All you really need to tell them is that you have a problem that will not allow you to stand in the long lines and they should give you a sticker. You are limited to 1 compainion that will is disignated as your 'assistant' and I believe they get some sort of sticker as well.
22nd-Aug-2012 01:44 pm (UTC)
Last year I cruised around the con with my mom on Friday, who was really hesitant to engage disability services. It was her first time doing so, but she was happy with them and the volunteers we encountered.

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.
22nd-Aug-2012 04:18 pm (UTC)
Working in a disability related field and having been to 10 years of cons... I've seen what disability service is saying. It's pretty honest.

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.
(Deleted comment)
22nd-Aug-2012 03:45 pm (UTC)
It's the official Disability Services wiki, they even refer you to it if you have a question about DS.
22nd-Aug-2012 03:54 pm (UTC)
My friend used disabilities services two years ago to get her badge because she has diabetes and a thyroid issue that make standing out in the sun impossible. Not only did they quickly get her badge but she barely had to explain anything before there was a staffer hurrying off to get it for her. She didn't plan to use the special seating or anything like that, but that ridiculous outdoor line for badge pickup was not happening for her! They still gave her a sticker just in case. Last year since she was already in the system, and again someone quickly got her badge and a sticker, no questions asked.
22nd-Aug-2012 03:57 pm (UTC)
My sister has used DS the last couple of years and has had no problems. She has nerve and circulatory issues with her legs and back and can't stand for long periods. She sometimes uses a cane but otherwise she may only limp a little bit so it doesn't always show. I don't know if she shows them anything at registration but I don't think so. She always arrives for a panel the same time as us line sitters and has not had a problem. Unfortunately there are 3 of us so someone does always get stuck waiting or sitting alone (and usually it's me since I'm the least whiny one).

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.

Edited at 2012-08-22 03:59 pm (UTC)
22nd-Aug-2012 10:04 pm (UTC)
Hello, I am the director of Disability Services, and without going into details on individuals and their situations, I will try to address your concerns. I will tackle them separately.

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.”


22nd-Aug-2012 11:07 pm (UTC)
Thanks for taking the time to reply. Given that you're the Director of Disability Services, I really hope you take the time to follow the links I posted, particularly the first three, and read up on the reactions your words have garnered from real people who genuinely need your help. You might be surprised to find that they are extremely negative.

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.
22nd-Aug-2012 10:52 pm (UTC)
[Note to self: formatting does not work on LJ, or if it does, I don’t know how to do it]

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.
22nd-Aug-2012 11:33 pm (UTC)
"As with everything we do, if you can explain to us why you NEED a policy modified, we do it."

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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