Beyond the Fix or How do I Live This F***ing Life? - WisCon 41 panel write-up
These tend to be long and only of interest to specific segments of folk so click the clicky to read.
Disclaimers:
I hand write these notes and am prone to missing things, skipping things, writing things down wrong, misreading my own handwriting, and making other mistakes. So this is by no means a full transcript.
Corrections, additions, and clarifications are most welcome. I’ve done my best to get people’s pronouns and other identifiers correct, but please do let me know if I’ve messed any up. Corrections and such can be made publicly or privately on any of the sites I’m sharing these write-ups on(tumblr and dreamwidth for full writings, facebook and twitter for links), and I will correct ASAP.
My policy is to identify panelists by the names written in the programming book since that’s what they’ve chosen to be publicly known as. If you’re one of the panelists and would prefer something else - let me know and I’ll change it right away.
For audience comments, I will only say general “audience member” kind of identifier unless the individual requests to be named.
Any personal notes or comments I make will be added in like this [I disagree because blah] - showing this was not part of the panel vs. something like “and then I spoke up and said blah” to show I actually added to the panel at the time.
Beyond the Fix or How do I Live This F***ing Life?
Moderator: R. Elena Tabachnick. Panelists: Kate Carey, Shayla D, Jesse the K, Lenore Jean Jones
#BeyondTheFix - for some good livetweets and resources
The panel started out with some good-natured joking about the moderator being late for reasons having to do with the panel topic and how they’d just get started.
Jesse introduced herself by saying “I’m a loud mouth”, as well as talking about how she’s been coming to WisCon for a long time and worked with others on improving access at the con and has watched how WisCon has improved and embraced better understandings around disability over the years.
Kate introduced herself by saying this was her 4th WisCon and that the membership assistance fund is what allowed her to get to her 1st one. She’s a champion of talking about invisible disabilities, and as a larger woman she gets especially tired of people who say “well if you exercises more...” [hear hear Kate!]
Lenore introduced herself by telling us this was her 20th WisCon, that she is Hard of Hearing but passes as hearing, and also that she is depressed. She touched on how depression is often co-morbid with other disabilities, or is often exacerbated by other disabilities.
Shayla introduced herself as someone who is both disabled and taking care of her mom who is disabled. Shayla talked about how she is just blind enough that she can’t drive but not blind enough that anyone gives her any money for it. When her pain symptoms were growing, she had doctors tell her it was all in her head, and once it was diagnosed, she was like “why yes, the cause was in my pituitary gland which is in my head thanks!”
Elena came in during the intros so was able to give hers at the end of this - she has a rare genetic disease, but insurance won’t pay for the genetic testing to confirm this. She never thought of herself as disabled, as she’s had this since she was a kid. She didn’t have a diagnosis, so everyone just thought she was weird. She kept getting more disabled, and had to keep giving up more things.
Right now she can’t leave her house for long, she can’t wear shoes or socks. It took her a long time to call herself disabled, but now she loves the identity - it helps to be able to say this about herself.
Jesse talked about having had mental health issues “since jump”, but that she didn’t know it was something that could be dealt with. In her 20′s, she started having pain everywhere and was diagnosed with fibro and cfs. Eventually, she stopped working and got to have the Disabled label.
She has also worked with Blind and Deaf communities and realized how much assistive technology and community can help. She applied that to herself, and realized how much using a wheelchair could help her. She was waiting for some authority figure to give her the Disabled label, but finally just took it and claimed it for herself.
A big change came when Jesse realized she didn’t have to be independent but could be interdependent. [I have a buncha stars and underlines in my notes right here - thanks Jesse!]
Kate talked about struggles she’s had because when she was “just fat”, she didn’t want that identity to define her life or limit her. Then she became sick and wanted to feel the same way about that but her symptoms included being unable to breathe and she had doctors telling her to lose weight. She felt like fatness was seen as a moral failing. She felt ashamed and at fault for her own sickness.
She realized she was willing to go to bat for friends, for example, who smoked and had COPD - but when it came to defending herself, it was another issue. At first she took on the label of “sick” but not “disabled” because sickness was something you could get better from. WisCon has been helpful to Kate in accepting disability.
Shayla talked about how her first neurological disorder was something that happened primarily to fat people. She found her family blamed one another for making her fat, and therefore causing her blindness. Her stance was - who cares how I got this way, this is now, let’s deal with it.
Shayla likes to pop out her white cane because her other disabilities are invisible, but when she uses the white cane, she’s more visible as disabled. When people tell her “you don’t look blind”, she replies “you didn’t look like an asshole...” (general laughing from the audience).
She talked about wanting something like a “crip card” to be able to show to people to prove she’s really disabled. Much laughter and discussion ensues on this topic.
Lenore talked about having impostor syndrome around disability; being “not disabled enough” or “not Deaf enough”.
At this point, a funny conversation happens around the live captioning of the panel and how other panelists are reading over Lenore’s shoulder in fascination as their own words scroll by.
Lenore continued with a story about talking with Jesse and apologizing for not being able to hear her and Jesse telling her not to say sorry about that and how much it meant to her. She didn’t know she was Deaf until she was 15, so she had subconsciously learned to lip read.
Shayla said - instead of apologizing, say “thank you for being patient with me” and referenced a comic online on the topic (check the hashtag - it’s linked to a couple of times).
An audience member brought up that all of this apologizing in regards to our disabilities has to do with the social model of disability.
Elena talked about having to say no to things and how adopting the Disabled label helped to give her permission to do that. Before that, she was broken and felt at fault.
Kate talked about how our self-worth is based on our ability to work and contribute something to society. She stated that she could work under some very specific circumstances, but even then she would lose much needed benefits. She gets told “if you just had more gumption!” We apologize because our disabilities are seen as a moral failing.
[Kate then made some comments comparing abelism to racism which felt a lil oppression olympic-ey to me in regards to wishing people could see disabilities as just a part of who we are the way race is. My personal thought on this is that there absolutely are people who see poc as having a moral failing due to their race, as well, so I get where Kate was trying to take this analogy but I feel like most analogies of this kind tend to fall apart on further inspection. Another comment was about how she strives to do colorblind reading so she isn’t taking the author’s race into account when choosing a book or while reading it, which again, I think is a very well-meant intention but that taken in practice as a whole would end up with many poc authors not being read because publishing and marketing practices are already set up against them so if we don’t specifically make attempts to read more books written by poc - we won’t be finding as many of them to read.
I discussed this with Kate afterwards and she agrees that the analogy falls apart and wishes she’d phrased things differently, just FYI.]
Somewhere in there, Shayla made her patented case against kale-pushers and I jumped in to add “well if you Deep Fry the kale...”
(Either Elena or Lenore, my handwriting is not clear here) said that if people blame us for our disabilities, it allows them to believe that it won’t happen to them.
Jesse brought up the role capitalism plays in all of this, and how it’s not a good system. Also the failure of the medical system - it doesn’t work for people like us, so we annoy them. Additionally, some spiritual traditions have the idea of health as being a gift from God, so what does that mean for those of us who don’t have it?
Shayla talked about social issues involved when you have to cancel on friends so many times that they give up on you.
Elena talked about her dislike of the Paralympics - not the people who do it, but the cultural stuff around it as “inspirational.” This allows people to think that even if they do become disabled, they can be one of those ones who can do all this other stuff.
Often, even if fiction, you only know a character is disabled due to the occasional mention of their wheelchair - otherwise they’re described exactly like the other characters. They never get tired, need downtime, require help with transfers or bathing, etc. It’s not a realistic portrayal of disability.
She added on to what Shayla had said above saying that she has difficulty socializing because she can’t leave her house.
Kate talked about how online gaming helps her - she can interact with people on her own terms. She talks about “painsomnia” [ha! yes! great word!] and how she is often up at random times and being able to socialize online at those times helps.
Kate and Lenore both agree that the word “should” is toxic.
Kate said another helpful aspect of the gaming was that she found games she was good at. She was good at her job and losing that was hard, so finding something else she could feel proud of herself about has helped a lot. The fact that this is something that isn’t valued by society is frustrating.
She revisited the topic beforehand about inspiration porn and said it’s not even about the disabled person really, but about the abled people around them.
Kate talked about giving herself a gold star some days just for getting out of bed, or getting dressed, etc. She talked about her “standing skills” as another thing society doesn’t value enough.
Jesse discussed how she has coped over the years by waving her hand up and down. She defined herself as a brain in a jar who could learn things - and then that was the last thing that she lost. She has coped in part by splitting herself somewhat mentally from past selves and can look back and say that she is so glad to know that person that could do those things without that being a judgement on who she is today. [my notes at this point read “me: crying” because I was sobbing my eyes out at the wisdom of this that I desperately needed]
Lenore said she is still working on that whole gold star thing. She is trying to reframe things from “I ought to be able to...” to “this is what I can do now.” [phew! yea.]
Elena talked about still doing the grief thing and how depression is connected to not being able to do things. [my notes: the grief never fully stops]
She talked about being in an online writing community but how she isn’t writing now, and re: Kate’s gaming thing - she is still seeking that thing that she’s good at and can do.
Kate said it’s okay to grieve it the same way you would the loss of a family member. Grief continues on but it’s not always as hard as it is at first all of the time.
An audience member talked about how all they can currently do is work and sleep and how to survive if they can’t get disability. They are worried because they need insurance but can’t work full time - when do they reach a point where they can apply for disability? The panelists all answer pretty much together that it sounds like they already ARE at that point - it’s time to start applying. Fill out the forms for your worst days, not your best - that’s a common mistake.
The audience member said their doctor tells them “well you’ve managed so far...” I and other audience members and the panelists all agree - then they need a new doctor!
Jesse emphasized that the system has failed us, not the other way around.
Kate brought up the ticket to work program and told the audience member to start the disability process now so they don’t get stranded. [v. good advice]
Elena talked about getting a geriatric doctor if you can because they’re less concerned with issues around weight loss and about fixing you - they know you’re going to die anyway so shrug. (big laugh)
There’s a moment where everyone sings Jesse’s praises as someone who is both a good resource on how to manage this stuff on a personal level and as someone who has good resources for others. I nodded emphatically through all of this and here’s another great thing about Jesse - instead of deflecting, she just smiled and took the compliments. What a good role model!
Shayla talked about her struggles with being able to work for awhile, then crashing, being homeless, being able to work for awhile, rinse repeat and having people say “well you can work...”
(Edited to add at Shayla’s request that she also said “I COULD work... If it was at a job I could do in the dark, on my back, *legally*. (Hell, illegally has crossed my mind many a time.)”)
Kate talked about how applying for disability is work.
Shayla talked about the difficulty in not knowing how she’s going to feel day to day, even minute to minute.
Lenore stressed the importance of asking for things that we need.
I added from the audience that to add to the list of toxic words - “burden”. Thinking of ourselves that way makes it hard to ask for what we need.
Jesse talked about how giving is a help too. So asking for help allows other people to give in that way.
Kate said that love is asking for help, because it shows that we’re putting our trust in them.
An audience member talked about The Ultimate Guide to Sex and Disability as being a beneficial resource to reclaiming their sexuality.
Another audience member talked about a youtuber - ability powered - a disabled gamer who likes to help other disabled folk in gaming.
Someone else from the audience talked about having a sister who is disabled who she lives far away from and wants to know how to help.
Kate stressed listening and acknowledging. Ask what she is doing not how she is doing. Sometimes the best thing is getting to vent to someone who isn’t the same three people she talks to everyday [yes, this!]. It can be really helpful to be asked if you want to vent or need help problem solving - or even do you just want me to do the talking for awhile.
An audience member offered that arranging for things like prepared meal deliveries and cleaning can be of use.
Kate said framing things like the above as “I want to do this for you” so they feel better about accepting it. She also added that she enjoys skyping with people she doesn’t get to visit with so she can actually see them.
Kate talked about having to skype to her mother’s funeral and how at least she was able to be part of it in that way. She also brought up FB live as ways to take disabled people to things they couldn’t otherwise go to.
An audience member also stressed the importance of knowing the people in their lives WILL say no if they can’t, which makes it easier to ask them. They can trust them to be honest about their limits.
Lenore emphasized offering to just hang out with someone and not talk if they don’t have the energy to talk - just be there with them.
We hit overtime for the panel and Kate said “I just have a few more things” - at which point I lol’ed (having paneled with Kate before) and closed my notebook so I don’t recall what those few more things were - sorry!
But do check the hashtag for this one, as folks did add many of the resources that were brought up during the panel.