Trouble with Disability Services?

[glasscannon.livejournal.com]

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

[glasscannon.livejournal.com]

Wow, really?

Yeah, I did choose not to visit DS last year, because guess what, dealing with a life-altering illness is difficult, depressing, overwhelming, scary, difficult to adjust to, and yes, a huge whopping sting to one's pride. SHAME is a big part of the response, so you should definitely give people who are ill and disabled a hard time about being ashamed. Anyone who has spent any amount of time with ill and disabled populations knows that asking for help can be difficult, and it'd be nice to see some recognition of that from Disability Services, and from self-appointed do-gooders like yourself.

I'm not blaming DS for not helping me last year. They couldn't help, because I didn't ask them to help. I merely pointed it out as a benchmark of how much I need DS. I can and do blame myself for what happened to me last year, but the only thing I can do to fix it is make myself ask them for help this year, despite the huge sting to my pride and my sense of self every time I have to explain that while I don't look sick, I really genuinely am. But when I started looking into Disability Services, the stories and tone I ran across scared the bejeesus out of me. And guess what? You're not helping.

Did you even bother to read the links I posted? The diabetic man's issues and limitations were explained in detail in a Cosplay.com thread, so I have to imagine that his daughter fully explained his issues and limitations in her email to Disability Services too. And yet she got back a form letter with absolutely zero offers of assistance. If all a person needs to do is tell Disability Services what accommodations they need, then why the rude, "if your problems aren't worse than mine don't bother", steeped in legalese form letter reply? Why deny a second minion to someone who explained why they need it?

Here's what I need: a sticker that says I can have a chair in line. There's a list several miles long of all the other things I need to manage my illness on a day to day basis, and another list nearly as long for all the extra stuff I need to manage it during DragonCon, but I'll handle those, thanks. I can't handle on my own any more without a chair in line. And yes, I feel a great deal of SHAME at being forced to admit that, but I'm trying to get over that, trying to choose thing thing I love (DragonCon) over the thing I hate (shame). Unless you've lived it, unless you've tangled with the shame of your own body turning on you, you have no right whatsoever to mock me for my shame.

Here's what I don't need: to be faced with a condescending tone, an eyebrow raise that says "you're clearly faking it", and demands that I explain the most intimate details of my illness and the ways it limits me to a complete stranger. Before starting this thread, every single interaction I'd witnessed with Disability Services included those things. It's been nice to see a long list of positive responses here, to balance out all the negative I've seen with regard to DS, but again, you're not helping.

[whiteladyeowyn.livejournal.com]

Well, did anyone ever tell you that you cannot have a chair in line? I have seen a ton of people using chairs in lines, with no stickers whatsoever. They just have a chair (or find one) and they use it. don't think I've seen anyone take that away from them.

I know tons of people that have used DS. I will be using them this year, because I need them (do I meet the legal requirements for disability? Nope. I got run over by a car, though, and will be wheelchair bound. But I am not legally disabled).

I have never, never, never seen ANYONE in DS tell a con-goer "you're faking it". They have to ask questions, to help determine your needs, and to see if any of your needs are things that they can help with. They cannot fix everything, cannot help with everything. But they will try their hardest. And as the DS person said in another response, they do alter things when they can.

[glasscannon.livejournal.com]

Nope, like most people who live with chronic debilitating diseases, I've modified myself rather than ask someone else to modify the way they do things -- that is, I've avoided going to any panel whatsoever that would involve a line wait rather than seeing if I could get a chair in line. But that leaves me exhausted, in pain, and missing out on panels I would like to see. So this year I'm going to try to modify my behavior in the other direction and actually ask for help. But again, unless you've lived with long-term illness or disability, it can be difficult to understand how monumentally hard it is to ask for help.

And I haven't had anyone in DS tell me that I'm faking it. But I've had friends tell me so. And family. And doctors (thankfully not my current one). And coworkers. And check-out ladies. And random strangers on the street. After a point, you start flinching before the all-too-familiar expression crosses their face. After a point, you start looking for warning signs of an aggressive skeptic, and the stories about and tone from DS that I ran across elsewhere set off huge warning bells in my head. That's why I started this thread, to hear from others who have used DS in the past if it's run by the same sort of judgmental ignoramuses who populate doctors' offices and grocery stores, or if it's populated by sympathetic people actually there to help. I'm quite relieved to hear that it's the latter.

But again, unless you've lived it, it's hard to understand how unwelcoming the rest of the world is. It's hard to understand the flinch-and-shame response trained in by all the unsympathetic people in the world. I genuinely hope you're not in the wheelchair long enough to learn that feeling.

[sylphon.livejournal.com]

For what it's worth, I've lived it and am very familiar with the shame. DragonCon disability services have never made me feel shame of any sort for using their services. They have always been very courteous and helpful. I find them extremely helpful when it comes to registration and in past years they have helped me by providing chairs while waiting for large panels.

I realize the tone seems off with some of their responses and the wiki, but legally they're in a bind. If they state something that gets taken wrongly, they can be held over a barrel. So they have to fall back on standardization. It's hard, especially on newly 'disabled' people, since it can come off as gruff, but eventually the skin does thicken and you realize it's just the way a world trying to stay out of legal woes.

[whiteladyeowyn.livejournal.com]

And I read the thread on cosplay.com. The person probably got the cut and paste reply from the webpage, about 'not being able to make everyone comfortable'. Because that is true. They cannot do that, just not physically possible.

We have NO IDEA what she said in the email to DS. If all she said is, "He has diabetes, what can you do for him", there was no response they could have given. Many people have diabetes, and it is a multi leveled disease. Nowhere in her post does it say what she did or did not submit in her email.

Now, if she said, "He cannot stand in the heat/for long periods of time", and got that response? Then yeah, that may be a Nazgul of a different color. But the way her post is worded, we have no idea what she asked DS. So we have no way of judging their response.