Since going viral last October, the invitations to speak at conferences and other events have slowly but surely started trickling in.
At first, it was thrilling. I’ve always wanted to travel and talk about my experiences, because I still believe that face-to-face interaction does something that my words on the screen simply can’t. I wanted people to put a human face to the very important issues that I’ve been talking about.
I wanted people to realize that trans people exist, trans people with bipolar no less, and that I am not only surviving, but thriving in a world that often limits us.
But just as quickly as the invitations came in, they were being revoked. Not because I wasn’t capable of speaking, or that the engagement was cancelled – time after time, the conference and workshop invitations were being withdrawn because I had asked for disability accommodations.
As a lifelong sufferer of anxiety, I had requested what many folks with disabilities request – a travel companion.
Sometimes we ask for a companion because we need an interpreter with us. For others, we need someone to offer us assistance because our mobility is limited in some way. For me, with a history of panic attacks, I ask for a companion so that I can better cope with my anxiety that is frequently triggered by travel.
This is not an accommodation I ask for because I want a friend to go with me for fun. This is not an accommodation I ask for because I am trying to inconvenience someone. This is an accommodation I ask for because anxiety severely limits my ability to travel, and having someone with me has made that anxiety more manageable.
In a perfect world, I wouldn’t need to ask for an accommodation; it would be built into the system. Heck, in a perfect world, I wouldn’t have an anxiety disorder to begin with.
But folks with disabilities often need accommodations to be able to participate in events. It’s unavoidable. And in almost every case, we are either asked to foot the bill for the “added expense,” or in many cases, our invite to participate is mysteriously (or sometimes, not so mysteriously) revoked.
We’re told it has something to do with budget, but I can’t help but hear it as, “Your voice does not matter enough for us to accommodate you.”
We are seldom represented at conferences and events – not only because we aren’t asked to be there, but because even when we are, there are obstacles preventing us from accessing the event.
We’re often told that it’s an issue of money, that they would LOVE to have us, that it’s so unfortunate that they can’t accommodate us. I’ve heard this more times than I can count.
But here’s my question: If you cannot make your events accessible to people with disabilities, who exactly are these events for?
By being unwilling to take the necessary steps to ensure that folks like me are able to participate in events, we ultimately create conferences that are by and for able-bodied people. We effectively erase and marginalize people with disabilities.
If you are denying someone the opportunity to participate in your event on the basis of their disability, it’s no longer about money and has everything to do with ethics. It’s not a question of money, but rather, a question of what YOU are doing to ensure that your event is accessible, diverse, and representative of the communities that these events are for.
This applies not just for those who are attending, but for those you have invited to speak.
To suggest that folks with disabilities are too expensive to bring to an event, or a financial burden you are unwilling to take on, tells me that you are less concerned with accessibility and more concerned with the bottom-line.
And that tells me that the problem isn’t with my disability or accommodations – the problem lies with you.
I am blogging about this not with the intention of shaming anyone in particular, but rather, because accessibility is a very real issue that speakers and writers like myself face. I raise this issue, too, as a challenge to those who are organizing events. What effort are you making to both recruit and retain speakers with disabilities? People of color? Queer and trans folks?
It’s so important, especially in blogging communities, that the events we create include as many of these diverse voices as possible. And if you aren’t making an intentional and sincere effort to be inclusive, it’s time to change strategies.
Otherwise, it’s a lose-lose situation. When folks with disabilities continue to be silenced and excluded, these events will inevitably fall flat because they only represent a small slice of what our broader communities really look like.
So I ask again: Who are these events really for?
Author’s Note: I know that there is some debate around whether to use “differently-abled,” “disabled,” or “person with a disability.” I acknowledge that there is some disagreement there and validate those concerns completely. I used the language that I identify with most, but recognize that not everyone uses this same language.
Let's Queer Things Up! 
Yes, yes, yes! I am traveling to Australia to speak at a conference in March and for the first time in my professional life, they asked me about accommodations AND I didn’t have to negotiate to have a personal assistant. I’m thrilled to have you as a fellow advocate.
As per language, I am a person first and promote the use of person first language (woman with a disability, person who uses a wheelchair, etc.). My most recent post in the Redefining Disability Challenge goes into depth behind my language choice and the medical vs. social model of disability. I only use disabled when I encounter a barrier imposed on me by society. It is not my inability to climb steps which disables me. It is the lack of a functioning elevator which prevents my full participation.
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First of all, congratulations on the conference! 🙂 I am so glad to hear that you are having a positive experience this time around.
Also, equally thrilled to be batting for the same team!
I tend to use the language similarly and within a similar framework, although I read a really thought-provoking article that made me recognize that there is not a universal agreement on how to contextualize and identify with disability, nor should there necessarily be that agreement.
The article is here and it’s great: http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person
But yes, I definitely think it is society’s imposition that is often at the core of disability, rather than my body’s fault or my fault.
And I love having these conversations, because I think it can be empowering when you realize that you can exist outside of the “people with disabilities are helpless OR people with disabilities are inspiration porn” narrative that able-bodied people tend to feed us.
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Thank you so much for the article. These conversations are important to have and I appreciate you adding your voice.
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I love to see people referencing that article as its written by a friend of mine and I agree with everything it says (I pop up here and there in it’s comments saying as much). It’s important to recognise that the dominant usage is not actually consistent across disability communities. Here in the UK the Social Model’s ‘disabled person’ is the predominant usage (and I’d argue societal disadvantage is so overwhelmingly common it’s never inappropriate), while in the States PWD is favoured. Personally I think the Social Model argument far outweighs the PWD one, but recognise that other people will differ – what disturbed me about the reaction to Lisa’s article were the one or two PWD advocates (and notably they seemed to be non-disabled people working in the disability sphere rather than disabled people themselves) who seemed to think their standards outweighed the right of the disabled person to select their prefered mode of address.
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I am absolutely in favor of folks using the language that works for them, and also am pretty adamant about the fact that no justification should be needed, ESPECIALLY from those in our community. Self-identification of marginalized folks should never be infringed upon.
Also, great point about cultural variance there. It’s not something I’m familiar with and appreciate the feedback!
I go back and forth between PWD and the social model, but generally opt for PWD as of right now (but there’s a lot of debate in my head about it, I haven’t fully decided where I am most comfortable).
Tell Lisa that the article was the bomb.com, and they have lots of love over here at LQTU!
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Seems to me this is precisely that, a barrier being imposed by society (worse, a society that claimed to be interested until it realised it would have to make an accomodation) and therefore Social Model ‘disabled person’ is appropriate whether it’s your normal primary use (it is for me), or not.
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David – I think that is why I use both forms. I am a person first, and there is nothing about my “personhood” which does not work. I use “disabled” when society has limited my full participation. There are cultural differences, and I code switch depending on my audience.
Language is a code used to express shared beliefs, values and ideas. If the language we use is not person first, what does that say about commonly held beliefs and values?
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This is really sad and just shows the lack of compassion in this world. I always find it really horrible if not all kinds of people are included in events and applications or anything really. We should all enjoy equal benefits. (I know, I’m a dreamer)
I don’t know if you have heard of the #1000Speak initiative? On 20 Feb a bunch of bloggers (we are trying to get 1000 bloggers together to post something) are posting something on compassion. If you are interested I’ll be glad to give you further details, either via twitter or you can visit my site and click on the icon. I think your voice would be an excellent addition to this cause.
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A dreamer, maybe, or just someone with their heart in the right place! It is really, really unfortunate. I’ve received emails since this post has gone up, and I’m blown away by the sheer number of folks with disabilities who have had their offers revoked simply for asking about an interpreter. It’s mind-boggling. And it’s wrong.
I have not yet heard about the initiative, but I would be totally down to get involved! Tweet me!
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This is well expressed.
Back in the late 1980’s, I became close friends with several people with severe physical disabilities. Soon, I was introduced to the concept that it is the human made world that is largely responsible for disabling a person. Given a few small considerations a person, once “handicapped,” is now allowed to freely function in society.
Since then, I have applied this kind of thinking to many other parts of our world and have seen the same thing you see. A world designed to prohibit those of us who are a little out of the norm from functioning.
The thing is that once people start to be treated as normal, they lose the diminished expectations they once had, and start to demand to be treated fairly.
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Yes yes yes! It has everything to do with how the world is designed, and WHO is designing things this way (hint: not folks with disabilities), that is at the core of our struggles. We have to keep making our demands known however we can, and hopefully the collective power of our words will make an impact.
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Reblogged this on DeeScribes and commented:
Sam says it well – if your event is not accessible for all, who is it for? If you are an event planner and you aren’t willing to make reasonable accommodations, please change the way you plan.
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Reblogged this on Melissa Fields, Autist.
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Reblogged this on Matan Koch's Blog and commented:
I think that this point is important, and is the complementary counterpoint to my crowdfunding piece that so many of you read on freshly pressed. Hopefully we can find a balance, pooling resources so that valuable voices are not silenced for true financial limitations, while encouraging individuals and organizations to reflect their values with their pocketbooks. Thank you, Sam Dylan Finch, for writing this insightful piece.
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Really good points. I was horrified when someone threw ‘access always costs more’ in my face after I did an access oriented con-report on last year’s Worldcon (http://davidg-flatout.blogspot.co.uk/2014/08/worldcon-on-wheels.html), mostly it doesn’t, if you do it properly, but occasionally, as with things like funding PAs for invited guests, it will. That’s when you have to ask yourself whether you’re serious about equality, or not, and it sounds like a lot of events are failing the test. In fact I know they are because a friend was reporting a conference they were due to speak at was refusing to make accomodations just a few days ago.
“I am blogging about this not with the intention of shaming anyone in particular”
If it’s happening so commonly, and to multiple people, then maybe it’s time we did start shaming people! (Yes, I’m a rabble rouser). Hell, when we come down to it, it’s people saying they’ll happily give you second class treatment on account of your disability, they should be shamed over that!
“In a perfect world, I wouldn’t need this accommodation. Heck, in a perfect world, I wouldn’t have an anxiety disorder. ”
Taking slight issue with this in that in general a perfect world should still have room for disability, it just shouldn’t matter, OTOH it gets complex with the actively negative disabilities such as pain, fatigue and anxiety based disorders. I tick at least two of those, possibly all three, and have a mobility impairment as well, so I recognise it’s a complex point to make – I’d quite like to do away with the chronic pain thank you, but I’ll happily keep the mobility impairment, I just want society to make it not matter.
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Though I’m in transit right now, I did want to clarify that what I meant was that the necessity for the accommodation would not be “needed” because it would be offered before I even requested it. It would be built into the system rather than being something I have to go out of my way to request. But yes, I agree with everything you’re saying here! I just wanted to quickly clarify!
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The state I grew up in does not want to pay to have real captions, or even stupid computerized captioning of what politicians say. Doesn’t matter if the majority of older adults are going deaf and are the majority of voters, or that there are many born Deaf who work and pay taxes into the system, or that there is an ADA law. Fact is those in power control all the money, and tax revenues are spent for the fully able bodied hearing society. There are zero Congressmen who are Deaf. Some European nations have Deaf who sign with interpreters who were elected to Parliament. We have no representation for those in wheelchairs, with Cerebral Palsy, or who are Blind either do we? So it is pretty easy to just throw out a bone once in a while to “disabled people” and ignore the bigger needs, such as sidewalks in DC that you can actually walk down (I got photos if you all want to see how impossible it is to walk down), or schools to provide books in braille, or a person with anxiety to have a specially trained dog with them on the plane. Get this, on the way back to the US from spring break trip the airlines told 3 Deaf people to get up and allow the white rich older folks to sit in the emergency exit row. Mind you 50% of the plane were hearing and 50% full deaf. We were told that hearing need us to speak so they can hear what is being instructed by us. Um, we said how in emergency will WE know what to do, who will SIGN to us? No reply. Oh, right…we are deaf, we can die. Who cares, it is important the wealthy white people who complained of paying for front row seats and were put in back got those seats, after all, policy of airlines is nobody deaf is allowed in an emergency row. Well, what if all on board were deaf except for 3? Yup, they get the emergency row. That is why we need to collaborate to pass more laws and to get the CPRD ratified. It is a UN bill. Congress will not pass it.
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