Signal Boosting

[caliente_uk]

The discrimination that people with disabilities have to put up with in this world upsets and angers me more than I can say.

Most of you know that my daughter is a full time wheelchair user, so this sort of attitude isn't new to me. But every time it happens it still feels like a punch to the gut.

Link to vom_marlowe's LJ:

Disability, fandom, and me: Here's your place, live in it, or the VVC storm

This has got to be one of the worst cases of discrimination I have ever had the misfortune to come across in fandom, and believe me when I say I've come across quite a few in my time.

Isn't it about time this sort of thing stopped happening?

ETA: And just so you know, this isn't the first time I've posted about disability and fandom. The sad thing is, I can't see things changing any time soon. *sigh*

Comments

[petzipellepingo.livejournal.com]

You'd like to think that by the year 2010 people would make an effort to be better but really, we might as well just go back to ancient Rome and throw people to the lions. Inconvient people that is.

I am deeply ashamed of my fellow man.

[gillo]

That is incredibly shoddy! I always assume fandom is a little more clued-in than the average, but these people clearly missed the memo about what decent behaviour entails. It's deeply depressing in 2010 that people can feel there are being kind and indulgent by allowing a wheelchair user a friend to help him/her for the first ten minutes only.

[herald-mari.livejournal.com]

I was amazed when I took my cane shopping (I was diagnosed with fibromyalgia and there are days the cane is nice) at how many doors swung back at me. If I had been older, or in a wheelchair? Apalled Mary was Appalled. I cannot imagine the little "not niceities" K has to deal with on a daily basis, and I just want to hug you and her and say that it shouldn't have to be that way. (And then go pummel the rude people who did them).

I've been trying for 10-11 weeks to try and get an "accomodation" on my job under the ADA (Americans with Disabilities Act.) What I'm asking wouldn't cost them a dime, and yet, apparently, I'd be better off panning for gold. :(

Stay strong. *HUGS*

[stormwreath.livejournal.com]

I'm asking this for information, not to be snarky, but it's something that's bothering me about the post you linked to.

Let's say you go to the cinema, and pay £10 to watch a film. You need help getting to and from your seat: of course you should be given it.

But let's say instead you want a friend to sit next to you for the entire film, just in case. Again, perfectly reasonable.

But should that friend have to pay the £10 for a ticket as well? Or should they be allowed to watch the film for free, because they're with you?

Is that a common expectation? Is it unreasonable, or appallingly ablist, to expect them to pay for a ticket if they're actually going to be there watching the movie the whole time? Because that's the strong impression I'm getting from a lot of these posts.

[quinara]

I'm not sure I'm in a position knowledgeable enough to leap in, but the main difference I'm seeing is that vom_marlowe is talking about an aide, while you're talking about a friend. Of course an aide might (and presumably is quite likely to) also be a friend, but it seems to me that in the first instance they would be there to help the disabled attendee. From what I can gather, it's not like they'd be pottering around the convention having their own independent funtimes apart from the few minutes they were providing assistance, they'd be 'on call', as it were - ie. aiding - and paying at least half of their attention on what they might be needed to do. Considering the simple geographical unlikelihood(?) that a wheelchair user, as anyone, would know and trust - and thus bring - someone with the exact same fannish interests as them (and thus make an aide's experience the same as what they would buy for themselves), it seems remarkably petty, in the very least, to act as if an aide is getting a free ticket to a show (because it's not as if they would be trying to sneak in to see the show - someone else, who bought their ticket, needs them so they can see it).

[Thanks for the link, Cal!]

[staubundsterne.livejournal.com]

And even if the aide is also fannish, it's still work; I would be attending this con in their professional function and due to the overlap of interest enjoy this one. I honestly do not see how that makes a difference.

[quinara]

*nods* I should confess my ignorance about exactly the extent of the work (I imagine far, far more than 'simply' helping an attendee move seats once an hour and then vanishing), hence my hedging, but of course it shouldn't matter anyway.

[staubundsterne.livejournal.com]

People with disabilities require different kinds of assistance - and the kind and amount of 'visible' work varies greatly. Another aspect that I think is important in this discussion (the question of visible/invisible disabilities shows up in laurasaphiro's journal a lot) is to consider that it's the person with disabilities' decision whether or not they bring an aide and it's not really temporarily abled people's place to question this decision/necessity, let alone to judge it.

(Unfortunately, I only have resources on assistance in German or else I could link you --- I'm also sorry that I am so harsh/curt, this debate is gnawing on me.)

I also think, I mean, instead of having a stranger there, you actually have a fellow fan/person who is enjoying themselves, everybody wins!

[quinara]

*nods*

I also think, I mean, instead of having a stranger there, you actually have a fellow fan/person who is enjoying themselves, everybody wins!

Exactly!

[caliente-uk.livejournal.com]

I think you're completely missing the point. This isn't about being given a 'free' ticket, this is about a disabled person being allowed access to the support and assistance they need. That without that assistance they wouldn't be able to attend the event at all. So occasionally (usually at a cinema or theatre) a carer is allowed to attend for free, so that the person (emphasis on person) with a disability is able to enjoy the full experience without having to worry about their medical needs being met.

Is that a common expectation? Is it unreasonable, or appallingly ablist, to expect them to pay for a ticket if they're actually going to be there watching the movie the whole time? Because that's the strong impression I'm getting from a lot of these posts.

So you're asking me if disabled people feel a sense of entitlement? Really? You, from your position of able-bodied privilege are actually asking me if I (or my daughter) expect free tickets to events because my daughter needs assistance?

I know you don't mean to be, but have you any idea just how offensive that is? I have never, in the eighteen years since my daughter was born, expected a 'hand out' from anyone. What we would like (but don't always get) is a bit of respect and understanding from people.

And for the record, I have yet to attend a convention where a carer/aide was given a free ticket. And nine times out of ten a disabled person and their carer/aide have to sit apart from their friends. For example when my daughter and I recently went to the theatre with a group of family members, we had to sit apart from everyone else as only the disabled person and one friend/carer could sit in the segregated designated wheelchair area. So yeah, being a person with a disability is so much fun! Maybe you'd like to try it some time? :)

[http://users.livejournal.com/mad_brilliant_/]

Wow, that's appalling!

[kazzy-cee.livejournal.com]

Generally it seems that the US is far less understanding about anyone needing anything, although I do realise the UK can be as bad, at least there are some legislations which are an effort to help restore balance. It goes back to the 'medical model' i.e. you have a problem we have to 'fix' it (i.e. we can't change the building YOU have to use crutches rather than a wheelchair), and the 'social model' - we have something that needs to be accessible to all, how can we ensure that happens?

It's just so upsetting, and I despair at the attitude which is just all too prevalent. I think it's the selfishness of it all that so sad - the 'I'm OK Jack' and you just have to fit in attitude.

*sighs*

[kazzy-cee.livejournal.com]

I understand this all too well Cal - a nearby cinema has many totally inaccessible screens, so if you want the choice to see the latest movie, you have to wait until several weeks into the run of a popular film when they decide to show it at the one accessible screen. It's unbelievable that the cinema don't acknowledge that everyone should have the right to go the cinema and see the latest blockbuster at the same time anyone else does!!! Why is someone who can't use the stairs made to wait???

Unfortunately disability is the one equality issue that just isn't addressed with any sense of urgency. If this was about exclusion of a culture/race you just know things would move faster.

Ack - sorry I'm ranting - I apologise, but this always pushes my buttons!!

[deborahw37.livejournal.com]

*Sigh*


Somtimes it seems as if we are getting nowhere

[stormwreath.livejournal.com]

So occasionally (usually at a cinema or theatre) a carer is allowed to attend for free, so that the person (emphasis on person) with a disability is able to enjoy the full experience without having to worry about their medical needs being met. [...] And for the record, I have yet to attend a convention where a carer/aide was given a free ticket.

Thanks, that answers my question.


So you're asking me if disabled people feel a sense of entitlement? Really?

Um...no? Pretty much the opposite. I wanted to get a feel for what 'reasonable accommodation' would involve in practice. I'm sorry my question angered you.

[caliente-uk.livejournal.com]

I wanted to get a feel for what 'reasonable accommodation' would involve in practice. I'm sorry my question angered you.

Oh no, your question didn't anger me. Frustrated and offended me a little, maybe, but not angered. Believe me, you'd know about it if I was angry. ;)

You'd be surprised how many people actually do believe that people with disabilities expect 'special treatment' or to be given 'free' access to things, when all they really want is to be treated with the same respect and consideration as anyone else.

This is a very emotive subject for me, so it's hard not to take things personally at times, but I'm sorry if I misunderstood what you meant by your original question. :)

ETA: I'm asking this for information, not to be snarky, but it's something that's bothering me about the post you linked to.

Just out of interest, why, out of all of the information in the linked post, was this the thing that bothered you the most?

Because, from my perspective, that was the least offensive thing about it. It was denying someone the help that they needed to be able to access the event that bothered me. But then again, I'm looking at it from the perspective of a person with a disability...

[caliente-uk.livejournal.com]

It really does. *sighs with you*

[caliente-uk.livejournal.com]

It really is. But what's really sad and upsetting is the fact that some people just can't seem to see it. *sigh*

[jerusha]

I was telling Tyson about this yesterday, and we were both aghast at the attitudes. I really wish that people would be more accepting and empathetic.

[stormwreath.livejournal.com]

why, out of all of the information in the linked post, was this the thing that bothered you the most?

It was 'bothering' me in the sense that I didn't understand it, or didn't know what to think about it, due to lack of information. Not that it was the part that I felt angry about. Maybe in context it was the wrong word to use. ;-)

(And yes, I admit it was the area where my first reaction was "Hang on, don't the con organisers have a point here?" - but I didn't trust my first reaction and wanted to understand all sides of the argument better. Thanks for your patience in replying.)


It was denying someone the help that they needed to be able to access the event that bothered me.

As far as I understand it, vom_marlowe hasn't actually been denied help as such; they read a draft accessibility statement from the con organisers, felt excluded by the language, and decided that they wouldn't be welcome if they should decide to attend the con in future. The accessibility statement has already been withdrawn with many profuse apologies and is being redrafted. From what I've seen, the policy did contain some outright bad rules, but the biggest problem was that it started from the premise of "We're sorry, but we won't be able to do this, this, or this for you" rather than a more positive "We'd like you to come, let us know how we can help you" approach. I can see - especially in light of your own comments - how that could come across as hurtful.

[caliente-uk.livejournal.com]

As far as I understand it, vom_marlowe hasn't actually been denied help as such; they read a draft accessibility statement from the con organisers, felt excluded by the language, and decided that they wouldn't be welcome if they should decide to attend the con in future.

I think you'll find that there was a lot more to it than that (one of the biggest issues being the fact that every person with a disability is different and has complex, sometimes hidden, needs), but I don't have either the time or the energy to go through everything that happened here. Anyway, I think vom_marlowe and others have already said everything that needs to be said on the subject. :)

The accessibility statement has already been withdrawn with many profuse apologies and is being redrafted. From what I've seen, the policy did contain some outright bad rules, but the biggest problem was that it started from the premise of "We're sorry, but we won't be able to do this, this, or this for you" rather than a more positive "We'd like you to come, let us know how we can help you" approach. I can see - especially in light of your own comments - how that could come across as hurtful.

I think the main thing we can hope for is that the organisers of VVC have learnt something from what's happened. Of course, actions speak louder than words, so only time will tell whether they've taken on board what people have said and actually do change their accessibility policy (in reality, not just in writing).

The thing is (and I don't mean to lecture you here, but I feel it needs to be said), this is an attitude that people with disabilities have to deal with every day, and is an ongoing battle that still isn't anywhere near being won. Things are slowly improving, but it feels like we take one step forward, only to be knocked two steps back. It's frustrating, upsetting and hurtful. And if people with disabilities (or those who care about them) don't speak out, nothing will change. So sometimes we have to be vocal about these issues and hope that our voices will eventually be heard.

Thanks for your patience in replying.

Thank you for taking the time to try to understand the complex issues involved. It's only by talking and communicating with other people that things (and attitudes) will actually begin to change. :)

[caliente-uk.livejournal.com]

It's difficult to believe things still have to be this way in 2010, isn't it? *sigh*

[caliente-uk.livejournal.com]

The thing these people don't seem to realise is some people with disabilities need support constantly. It isn't just about the disability you can see, it's about the hidden disabilities that no-one but the disabled person and their carer/aide/friend know about. It makes me so angry! :(

[caliente-uk.livejournal.com]

(I was diagnosed with fibromyalgia and there are days the cane is nice)

I'm so out of touch with everyone these days. I had no idea about this! I'm so sorry, Mary. You stll have my email address if you ever need to talk, don't you? I miss the old days at ACN when we used to chat about anything and everything. :(

In most cases, it really wouldn't cost anything to make things more accessible for people. But it's the attitudes that get to me the most. I'm an understanding person, and if there's a genuine reason why something isn't accessible that's perfectly okay, but people don't have to be so nasty and offensive about it. It makes things so much better when people genuinely seem to care and want to help you, even if (through no fault of their own) they ultimately can't.

*many hugs*

And I mean it, email me any time!

[caliente-uk.livejournal.com]

[Thanks for the link, Cal!]

It's my pleasure! :)

And thank you for trying to explain the situation. It's such a complicated issue!

[caliente-uk.livejournal.com]

You'd think attitudes would have changed by now, wouldn't you? It's 2010 for goodness sake!

[caliente-uk.livejournal.com]

I think in some areas the US is doing better than we are, but in other areas they are far less understanding. Things are slowly improving, but it's a long and painful process. There are still so many places that are inaccessible to K (and therefore to us as a family), and everything we do has to be planned out well in advance to make sure we don't come up against any unexpected obstacles. It's so frustrating!

It's just so upsetting, and I despair at the attitude which is just all too prevalent. I think it's the selfishness of it all that so sad - the 'I'm OK Jack' and you just have to fit in attitude.

I find it incredibly frustrating, upsetting and hurtful. It would be hard enough if it was myself, but when it's your child it's even more distressing.

For example, K would like nothing more than to go to her first 'grown-up' nightclub now she's eighteen (with my son's gf, who's able to give her the support she needs), but none of our local clubs are accessible. It really doesn't seem fair that she's being denied things that all other young adults take for granted. These are life experiences she should be having, so she can enjoy some independence away from her parents, and be with people of her own age.

It really is devastating as a parent to see your child held back in this way, when all she wants to do is stretch her wings as much as she's able. And it isn't her disability that's holding her back, it's the society she lives in. :(

Sorry for the rant, I just get so angry about these things!

[caliente-uk.livejournal.com]

People with disabilities require different kinds of assistance - and the kind and amount of 'visible' work varies greatly. Another aspect that I think is important in this discussion (the question of visible/invisible disabilities shows up in laurasaphiro's journal a lot) is to consider that it's the person with disabilities' decision whether or not they bring an aide and it's not really temporarily abled people's place to question this decision/necessity, let alone to judge it.

Yes! No-one but the person with a disability and their carer/aide knows what support they need. There are often disabilities or medical needs that are hidden, and why should someone have to tell all and sundry what they are if they don't want to?

I completely agree that it should be the person with a disability who decides what support they need, and that other people have no right to pass judgement on it.

It makes me so angry that this sort of thing is still happening in 2010!

Thank you so much for this comment. :)

[quinara]

And thank you for trying to explain the situation. It's such a complicated issue!

I just hope I vaguely tally with reality!

[diachrony.livejournal.com]

Oooohhh this made me so ANGRY.

I hope the pot is being stirred in the right direction and access is improved. From the post you linked I got the impression that people are so shockingly ignorant they actually do not realize how SIMPLE it would be to make many needed accomodations, and mistakenly assume it would be an onerous task ... thus they blow it off and make excuses why they won't bother. That's a problematic & selfish attitude anyway, but the thing is it isn't even true. The bottom line seems to, as usual, be ignorance & selfishness. An attitude of empathy & inclusiveness, open to being educated, changes everything - from a sense of being unfairly burdened to a sense of happily including & engaging with one's compatriots.

I have an "invisible" disability in that I'm 100% deaf. Because I have friends who care to assist me, I'm not too often left out of things, but if they didn't care to? I'd be clueless regarding what was going on around me. It's one reason I rarely attend cons, where so much depends on one's being able to hear. Yet I'm not hampered in my physical movement and it infuriates me when people don't care to accomodate those who are so hampered - it is NOT HARD to show consideration for others. We just don't have the cultural influence that makes such consideration a natural or supported reaction. We're set up such that the default is "100% physically able" and why? ... it's not at all rare for people to be disabled in multitudes of ways - we just (as a culture) want to pretend that problem DOESN'T EXIST. Thus try to erase from public consciousness the many, many people who don't fit our ideal.

And I just don't find that excusable. We need a sea change in attitudes. If nothing else, niche groups - fandom in particular I'm thinking - knows better, and has no excuse to not put willing and eager effort into being as inclusive of those with disabilities as possible.

I got het up and rambled and I'm not sure I made very good sense here, I'm sorry.

[caliente-uk.livejournal.com]

I think you and staubundsterne both explained things very well. :)

It's difficult to be objective when discussing something so personal, and I have a tendency to let my emotions get in the way, so I was grateful to both of you for helping me out like that! Although, I do appear to have found plenty to say on the subjesct anyway. ;)

[herald-mari.livejournal.com]

I miss those ACN days, too. I feel like I lost touch with everyone... you, Jody, Rae, Lee, everyone....

I'm doing better now that I'm back on Weight Watchers and losing weight. It does make life "interesting" though from time to time.

You have my email right? The same offer applies. You need to talk - I'm here!

*MEGA HUGS*