UPDATE: Thanks everyone, I'm ending the AMA but may check back later tonight if there are any additional questions!

I'm Alice Wong, the editor of a new anthology published by Vintage Books available now, Disability Visibility: First-Person Stories from the Twenty-First Century. People can check out my website for more info about the book, online events, plus a free discussion guide & plain language summary https://disabilityvisibilityproject.com/book/

You can sign up for my newsletter for the latest: https://disabilityvisibility.substack.com/

Do you like podcasts? I have one if you want to check out interviews with some amazing people about disability culture, media, and politics (audio and text transcripts): https://disabilityvisibilityproject.com/podcast-2/

I'm also on Twitter @SFdirewolf / @DisVisibility and Instagram @disability_visibility if you want to hit me up later.

A little about myself: I am a disabled Asian American activist, research consultant, and media maker. I created the Disability Visibility Project in 2014, an online community dedicated to creating, sharing, and amplifying disability media and culture. I love coffee, cats, baked goods, and all types of salty fried food. Here's a little more about my personal story: https://letterstothrive.tumblr.com/post/55608302401/hey-angry-girl

This AMA is part of the PRH Book Your Summer Live. We’re all unifying under this one banner (u/penguinrandomhouse) but all comments, answers, and opinions here are 100% mine and do not represent Penguin Random House or its affiliates.If you want to purchase my book or any of the books featured in Book Your Summer LIve AMAs, visit: https://www.mystgalaxy.com/book-your-summer-reddit-ama

Proof: https://i.redd.it/8l91vuoma7i51.png

Let's talk about disability culture, representation, & storytelling! Ask Me Anything!

Comments: 152 • Responses: 53  • Date: 

McStratman72 karma

Hi Alice! I am the director of the disability services office at your alma mater. What general advice do you have for disabled students in higher education? Would your advice for students with a visible disability differ from your advice for those with an invisible disability?

PenguinRandomHouse92 karma

Not sure which alma mater but maybe IUPUI, I'm guessing? My advice wouldn't be different for students with a visible or invisible disability. I would generally say: "You have rights and should not feel any hesitation in asserting them. You belong on campus and deserve to enjoy everything like any other student. There will be people who underestimate or dismiss you due to ableism but you are not alone--connect with other students on campus and at other schools because there is a wealth of knowledge and support out there"

johnjay2354 karma

I know one of the biggest issues is to get over the fear of stating I'm disabled, and asking for help. I went to SDSU for 6 years. Three of those, I put with walking long distances. Then I had a young man with an artificial leg confront me about why I was doing what I was doing. He went with me and introduced me to the disabled services department. I got a disabled placard and was able to drive on the campus and park at the front door for many of my classes. My grades skyrocketed and I was able to get in grad school.

PenguinRandomHouse2 karma

That's awesome and thanks for sharing!

McStratman37 karma

Thank you for your reply. Yes, I am at IUPUI. I apologize for not being clear. I would like to share your advice with students at IUPUI. Might I have your permission to post your advice --with attribution--on our web page?

PenguinRandomHouse26 karma

Sure!! Take care--oh, those IUPUI days...

Toclaw159 karma

Hey Alice! There is a huge numbers of people with disabilities that are into nerd/geek culture. How can we make more spaces Ike cons, comics or gaming more accessible and inclusive?

PenguinRandomHouse56 karma

I am a total nerd/alien/cyborg so you're speaking my language! I see a lot of amazing disabled gamers on Twitch and other streaming platforms and all kinds of communities within fandoms that are by and for disabled people. One of my bucket list dreams for years was to attend San Diego Comic Con but I never got around to it (plus the heat and huge crowds scare me). It was pretty cool to see cons and other events go online this year and I hope that continues. I'd also love nerd/geek cons, events, platforms, and publications amplify disabled nerds, artists, makers! Thanks for asking and live long & prosper!

johnjay2312 karma

You may of really liked but it would be very frustrating at times. Things might of changed, but the years I went, I took my son and daughters with me, it wasn't very fun at times. I'm life long disabled person. My disability is in my joints. I can walk with a cane at times. There was only one disabled station. It was on the first floor, tucked in the very back corner. No benches, chairs or water on the second floor. But it was amazingly cool as well. Got to see the first panel for the Avengers movie, and just too cool.

PenguinRandomHouse1 karma

I used to go to Wondercon when it was here in the SF Bay Area many years ago and it was a much smaller and more manageable con. At least I had that experience and thanks for sharing!

wassuupp6 karma

Any streamer recommendations? The only one I currently is goodtimeswithscar.

PenguinRandomHouse2 karma

There are a bunch of Deaf and disabled gamers out there--maybe check out https://ablegamers.org/ because they probably have networks of disabled streamers. I also have this podcast episode featuring 2 disabled people who stream/play https://disabilityvisibilityproject.com/2020/02/24/ep-71-games/

Arlais_Fale24 karma

Hi hi! First time poster on AMA. (Am I doing this right?)

I am so grateful for your time and attention today. I have a question about advocacy, one that leaves me awake at night.

Is it even appropriate for me to advocate for people with intellectual disabilities, as a non-disabled person?

To give a little background, I am not a person with intellectual or physical disabilities but I am an art educator for people with disabilities and my older sister is neurodiverse and I facilitate much of her needs, which is why I often talk about abelism and openly advocate for disability justice.

However, and there are times when I’ve been told to “stay in my lane” when talking about disability, because I don’t have any lived experiences as a person with disabilities. I understand my privilege and the unequal power dynamic between people without disabilities and with disabilities… but I truly feel like I’ve been impacted by “disability” through the way our society marginalizes and segregates people with disabilities.

I'd love to hear your perspectives. And thank you!

PenguinRandomHouse36 karma

Hi there--it's my first time too and it's NERVE WRACKING. I think I'm doing ok. Thanks for joining. I think this is a tricky thing to navigate and I appreciate your question. We do need allies and advocates in the disability community, non-disabled people included. So much of what's needed for non-disabled people is how to remember to center it on disabled people and to not make it about yourself (because unfortunately there are lots of folks out there who do that and suck up all the oxygen and attention). The way you frame yourself is important too on how you talk about your approach with advocacy such as, "I'm working with" versus "I'm doing this for" things like that. And I also think listening to critique and taking it seriously by disabled people is important. You can stay in a particular lane and still be effective. The reason why there's such pushback at times is because we (disabled people) continually presumed to not be able to advocate for ourselves and that what we say doesn't have the same weight as when a non-disabled person says it (this is something I experienced). I hope this helps and encourage you to be as mindful as possible!

hb4228624 karma

I'm honestly not even sure this is an appropriate question to ask but I'm going to do it anyway. How do you feel about caregivers? My own story is (still) waiting moderation before it'll be posted on r/disability, but I'm a caregiver who is on 24 hour call for my disabled from birth younger brother.

I feel like, people who end up dedicating significant parts of their lives to take care of a disabled loved one are often treated like ghosts by society. In my own case, I'm largely isolated outside of my immediate family so of course nobody knows that I exist but when I look around online and read stories from other caregivers I feel as though many of them would share my sentiments.

When we share our stories, we get hit with stock responses such as omg you're a good brother/sister/son/daughter/husband/wife/whatever else but, that's about it. After that, we get memory holed.

I think that there's a lack of emotional/psychological support networks for people who have a caregiver role. It's one thing if you're a nurse or what have you, being paid to take care of someone you barely know but it's quite another when you're someone with no formal training who has been in a caregiving role for a family member for the majority of your lifetime like me and who will be in that role for their entire lives.

No caregiver does what they do for recognition or props or whatever. If like me, you're doing it because you love the person that you're taking care of. Still, it's a challenge both for the person being cared for and the person giving care.

Apologies if I'm doing this wrong. I'm 34, and I've never used Reddit until literally yesterday so I'm learning as I go. So yes, to close: How do you feel about caregivers? Is society doing enough for them?

PenguinRandomHouse26 karma

Thanks for sharing--I am someone who relies on paid and unpaid home care workers/caregivers so I appreciate your question. I would say that this speaks to our society's devaluation of care and caregiving, which for the most part is done by women (and I think there's definitely a gendered aspect). It's not seen as 'real' work that requires expertise and skills. It's not respected. There are various advocacy groups for family caregivers and actual advocacy on caregiving policies if you are interested. For example: https://www.caregiver.org/ and https://www.rosalynncarter.org/

jinpop21 karma

Hi Alice! I started reading Disability Visibility earlier this week and am really loving the range of authors and forms of storytelling in the collection so far.

As someone who works in publishing, I was especially struck by the call to arms in your introduction for someone to form a disability-centered imprint at a publishing house, and more generally for the industry to hire more disabled employees. What do you see as some of the most common barriers and practices that keep disabled people from jobs in publishing? What do you think is the simplest first step that lower-level people without hiring power can do to make the workplace more accessible and inclusive?

PenguinRandomHouse30 karma

I think of of the things that came out of the pandemic is the expansion of remote work. I was thrilled to see an internship by Macmillan (I think) that's all remote this year. HOWEVER, it was also bittersweet when I think of all the disabled and chronically ill people over the years who never had the chance due to location, work hours, lack of flexibility. Some of the barriers are immediately attitudinal: 'I can't find disabled candidates' or 'Can this person really do the job?' I also think there's a big class element too. Publishing, like other fields, is about networking and who you know. If publishing truly wants to face the reckoning in a meaning way they'll open up their ideas of what kinds of qualifications and skills are needed. They'll also offer opportunities for disabled and people from underrepresented communities to have work experience in a variety of ways, they'll provide material support for those who can't afford to travel or pay for things (but have the potential and talent). Things like that. I REALLY want to see more disabled and chronically ill people in publishing in all divisions/roles and that means transforming the way work is structured. And when you build in accessibility, it's going to benefit ALL. And hey, and spread the word about the idea of a disability-specific imprint with your colleagues! I'd love to help make this happen. Thank you for your question.

Chtorrr21 karma

What is the very best dessert?

PenguinRandomHouse63 karma

Thank you for this excellent question! Ok, here are a few of my faves and I cannot rank them because it would be too difficult - Sliced peaches from the peak of harvest, it's like eating sunshine - Panna cotta or lemon posset - CHEESECAKE - Apple and/or pumpkin pie - Ice cream (flavors: coffee, peanut butter fudge, brown butter, or chocolate)

NOW I AM HUNGRY! I hope you eat something delicious today!

datafox001 karma

What kind of peaches? As a person of Chinese decent also I always think of white peaches as my favorite.

PenguinRandomHouse2 karma

I am very lucky to be in the SF Bay Area and a dear friend went to a peach farm and got me some delicious yellow peaches!! But yes, Chinese folks love white peaches too!

Chtorrr19 karma

What would you most like to tell us that no one ever asks you about?

PenguinRandomHouse33 karma

So many deep dark thoughts....so many!! LOLZ. But seriously, I'd love to talk about things outside of activism all the things that I enjoy as a human being such as television, cat videos, delicious food, and other things. I have strong food opinions and am ready to share them with the world. Thanks for asking!

IamSamGamgee12 karma

Now I want to know your most controversial food opinion! What is it?

PenguinRandomHouse41 karma

Let me think on this...this deserves a good answer. Will get back. Ok. Not sure if it's controversial BUT I think fries w/ aioli are better than fries with ketchup. I'll try to think of others...

Chtorrr9 karma

Do you have any pets?

PenguinRandomHouse18 karma

Oh, I had the best cat a long time ago, his name was Meowmee. Rest in peace. He lived for a good long 14 years and our entire family was allergic but we suffered because he was great. After he died we moved into another home and decided it's better to have a dander-free environment. But I do love cats from afar!

Neonbluefox18 karma

Hi, thanks for doing this AMA

Have you found ways in making psychiatric disabilities more visible in a healthy/positive way?

PenguinRandomHouse17 karma

I interview and center stories with all kinds of folks with psychiatric disabilities. I can never know or speak for folks w/ psychiatric disabilities and try to help share their stories. Here are a few pieces for example from my website: https://disabilityvisibilityproject.com/2020/07/22/abolition-must-include-psychiatry/

And this: https://disabilityvisibilityproject.com/2020/05/17/ep-77-mental-health-advocacy/

And this: https://disabilityvisibilityproject.com/2020/07/19/after-30-years-the-ada-leaves-people-with-psychiatric-disabilities-behind/

notyouravgho202017 karma

Hi Alice! I was curious about what advice you had for disabled editors who may want to put together anthologies / collections in the future? What did you learn that you wish you had known/what were some happy surprises along the way?

PenguinRandomHouse16 karma

Hi Sandy! Thanks so much for asking this question. First, we need MORE disabled editors, copy editors, publishers! I would suggest if they are looking to do an anthology to think about what's missing and what they want to share with the world. What will make your collection different? I learned a bunch of things since this was my first time working with a major publisher--the joy of collaboration and the importance of respecting and defending a writer's style and voice. One surprise for sure is the amount of work finalizing a manuscript for print--I have a deeper appreciation of what goes into putting a book together and how many different people are involved!

RebaRocket17 karma

What are some of the biggest changes/ improvements that still need to be made, to support differently-abled citizens, here in the US? What is the biggest challenge you (still) face?

PenguinRandomHouse79 karma

Hey there! Thanks for your question! Answering this can take an entire hour but speaking for myself I feel one of the biggest challenges is the perceptions of what disability is and how it's not valued. For example, disabled people are killed by police at staggering rates, disabled people are killed by their family members, during the pandemic disabled and other people (older, Black, Brown, Indigenous) are considered disposable or 'acceptable' losses. So in a nutshell the believe that our lives have less quality than others. And this is a social/cultural issue that can't be fixed by a law

chronoventer4 karma

As a an extremely physically disabled person, I love this answer. I love that you didn’t sugarcoat it.

PenguinRandomHouse2 karma

Nope--gotta keep it real because lots of people don't realize how many structural things are against us!

MidwesternCatholic12 karma

There’s a huge stigma against mental health disabilities, especially among American men. As an American man, what can I do to combat that and to combat the ableist American culture in general?

PenguinRandomHouse16 karma

Hi, thanks so much for asking this question! I learn from people with mental health disabilities all the time. As a man, I would definitely explore and reflect on the role of masculinity in keeping men from being open about their mental health. It's an unfortunate American value that we prize 'strength' and that we don't associate strength with vulnerability and asking or needing help. We're all interdependent and that's what makes us stronger as individuals and as a community.

Lemons529 karma

Hey Alice, congratulations on the book! I'm currently talking to the folks at Penguin Random House to see who distributes the book in the UK, hopefully I'll have a copy in my hands soon!

The book is the only book I can think of which has had a audiobook, e-book, and a plain language summary. What were some of the challenges in organising these versions of the book to ensure it would be as accessible as possible?

I hope to see more books be this accessible!

PenguinRandomHouse14 karma

Hi there! Thank you very much for your question. I know that several folks I know in the UK had trouble getting a copy, they were sold out or back ordered. I was delighted that the publisher released the e-book, audiobook, and paperback at the same time so that readers have options. And it was important to me to add as much complementary materials with the book that can open up discussion and access even further. I learned a lot from disabled people who use plain language on how this is an access issue that's often overlooked so I hired autistic writer/journalist Sara Luterman to write the plain language version and writer Naomi Ortiz to write the discussion guide. I wanted as many free things to go with the book. If you check out my website, I recently added an infographic too! I do not know for sure if my book is the first to do all of this but I hope it encourages other writers to do the same! https://disabilityvisibilityproject.com/book/

voya_kliattsdottir6 karma

Hi Alice! I'm a librarian and editor. What do you think we can do to encourage the publishing of own voices disability stories and discourage non-own voices takes on the subject?

PenguinRandomHouse8 karma

I LOVE LIBRARIANS (and editors)! Thank you for this question. I would say as librarians, hosting events and prominently displaying and supporting own voices stories would be a great start. Host events and programs/activities centered on work by own voices writers. As an editor, make own voices stories a priority. Not sure if you saw the recent hullabaloo on Twitter but Bookriot published a horrible recent list of books about disability that was majority non-own voices and disabled people were NOT having it. Pushing back on publications like Bookriot and demanding better coverage (and hiring disabled writers and editors) is something we can all advocate for!

IamSamGamgee6 karma

What is the biggest change you'd like to see in terms of representation of disability culture in media?

PenguinRandomHouse18 karma

A few things but the very top is more disabled people of color!!! And especially all kinds of disabled people of color, who are queer, gender non conforming, immigrants, etc!

BrazenBull6 karma

Hi Alice! Thanks for doing this Q&A!

There's a growing subset of disability and amputee-themed porn online at the various adult streaming sites. Does the disabled community support this genre of porn for exposing disabled actors to the mainstream viewing audience, or do you view it as exploitation?

PenguinRandomHouse12 karma

There are disabled people involved in porn and other forms of work in the sex industry and I support anyone who goes into this by choice and feels empowered by it. So many aspects of culture are exploitative because of the gaze and who is the one gazing and who is the object. And we've seen lots of artists and cultural workers subvert these notions.

Any_Blueberry35025 karma

Hi Alice! I am trying to learn more about microaggressions and how we sometimes say stupid things that we think are positive but are actually causing pain. I know there must be many examples of this, but is there one microagression that you encounter very often?

PenguinRandomHouse17 karma

Compliments that really aren't compliments is one microaggression I face a lot. Like, one thing you can check yourself is if something is really worth praising if a non-disabled person did the same thing. Sometimes non-disabled people are so blown away by what I do and that can be low-key annoying because I'm just trying to live my life!

kei_sol5 karma

Hi Alice! Thank you so much for doing this! I was born with a facial difference but did not know I fit into the disability community until just a year and a half ago. Since becoming aware of this, I have been going down the long, complicated road of learning as much as I can about advocacy and representation…especially in performing arts and entertainment, which is my industry. Could you give some advice on advocacy for a “baby advocate” like me? 

PenguinRandomHouse6 karma

Hey there! I'm still a baby advocate too--still a work in progress for sure. I'd say figure out what you care about and different ways you feel comfortable expressing yourself. There are lots of different ways to be an advocate and you shouldn't feel any pressure to do things one way! The more you ground your advocacy on what you're passionate about, you can't go wrong. And welcome to the community!

kei_sol5 karma

I appreciate you so much, Alice! Thank you for the advice and for everything you're doing! I'm halfway through Disability Visibility and cannot tell you how much of an impact it's making on my life.

PenguinRandomHouse5 karma

That make me really happy and I am so glad the book means something to you. That was always the hope!

xojulianne4 karma

Hi Alice -- thank you so much for doing this AMA! What did you find was the most surprising part of publishing a book?

PenguinRandomHouse6 karma

Hmmmm, everything's a bit of a surprise. I guess one thing is I do not know exactly how long the whole book promotion thing is supposed to last. It's basically a part-time job and one that I'm happy to do but it's a LOT of work and mostly uncompensated. I'm doing this for the love of the book and to get the word out as much as possible. Another thing is how fast things have to happen sometimes for the manuscript. Staying on schedule is a THING!

topiramate4 karma

My family is also from southern China and HK and I was wondering what the dialogue about disability was like for you, within that cultural context, particularly with respect to their views on you possibly having a family, children, career? I could say more about my own experiences but would just be interested in hearing about what messages you got growing up and how that affected your views of your own future.

PenguinRandomHouse1 karma

Hey there! Yes, there's a lot of cultural stuff that was difficult for me as a disabled person. The usual stigma and shame. The feeling that something 'bad' happened that caused my disability or somehow it was my mom's fault. If you look in my post at the very top, there are 2 links to essays by me that touch on me being a disabled Asian American if you want to check out. Also, there's an awesome essay in my book by Sandy Ho who talks about her experiences as well!

CH20164 karma

Hi Alice

Really enjoyed your book it was incredible, Did my dissertation for my undergrad on the human rights abuses of disabled people in the UK. I am now planning to write a book on the oppression of disabled people in the UK as a whole. What tips would you give to a novice writer?

PenguinRandomHouse6 karma

I guess it depends on if you're doing it from a historical perspective or something different but I hope you interview a lot of disabled people for your book and capturing what's happening now (and for decades) with austerity cuts. Not sure if you already saw this but Frances Ryan wrote a great book last year that might be of interest: https://disabilityvisibilityproject.com/2019/07/31/austerity-disabled-people-in-the-uk-qa-with-frances-ryan/

CH20163 karma

I want to make sure disabled people voices are elevated in the book. I also have my own experience to draw on. Dr Frances Ryan's book is what inspired my dissertation and was my most crucial source, I only wish it was required reading here in the UK. While I want to of course draw on the human rights abuses of the benefit system here, I also want to discuss peoples attitudes towards disability including both citizens and the media.

PenguinRandomHouse4 karma

Good luck!

DaniTheSquirrel4 karma

Hi there Alice. Love what you are doing. MS sufferer and advocate here for youth and recently diagnosed. In my studies and experiences, MS and other autoimmune diseases and brain ailments have much in common and all benefit from each other when it comes to research. As great as that news is, I was curious about your views on two things.

First, what do you think would be the most viable way to take what we know about disabilities and prepare it to educate a large demographic that would not understand the medical jargon and nitty gritty specifics (aka "explain to me like I'm five")? I've seen some great resources out there in sites and articles, but many still can go over heads or are not telling the full story. What medium do you think should be explored more as a possible connection point to teh average person?

Second, what is the best weapon against stigma you have seen so far and how you think the battle for awareness, acceptance, information, and change should move forward?

And last but not least, do you have a kitty? If so, what kind?

Thanks for your time!

PenguinRandomHouse4 karma

I'm all for using a variety of mediums to reach people. Using plain language and being as honest as possible is always a good rule of thumb. You can also be specific or broad. I think we shouldn't estimate what people are capable of or interested in so as long as you are being authentic and telling your story in the way you want, you can't go wrong. I used to have a kitty (there's a question on here where I talk about my dearly departed kitty). Take care!

tlallcuani3 karma

Hi! I’m a physician working in a hospital setting. All too often, I am horrified by how little effort is made to provide accommodations for patients with disabilities, often resulting in completely dehumanizing situations. I’d like to advocate for these patients and change how hospital care is delivered. Do you have any thoughts about this? Any recommendations?

PenguinRandomHouse1 karma

Hi there, thanks so much for this question. Isn't it ironic how healthcare settings remain so inaccessible?!? I am still trying figure out why that is. Such a long way to go to deal with racism, sexism, and ableism in medicine. One thing that's important to me is to have people from the disability community involved in a hospital's ethics committee (especially in light of the pandemic & development of triage guidelines). I would also recommend Patient Services to do a lot of outreach to the disability community about accessibility and accommodations AND for actual responsiveness & accountability when requests or complaints are made. It sucks, but sometimes disabled people who encounter barriers and try to work on finding a resolution have no recourse except for legal action because institutions do not comply with the ADA and other laws. One other thing--I hope there are more healthcare professionals with disabilities and there's a great campaign that you might be interested in checking out that highlights doctors with disabilities https://www.meeksresearchgroup.com/docswithdisabilities Thanks again for your questions!

LElias27843 karma

Who are your favorite authors/what are your favorite books?

PenguinRandomHouse4 karma

Hey there! There are SO many writers!! I do have a list of additional reading in the back of my book if you want to discover more. One recent favorite is a YA graphic novel by Marieke Nijkamp, "The Oracle Code." It's excellent and you can check out my Q&A with Marieke here: https://disabilityvisibilityproject.com/2020/03/09/qa-with-marieke-nijkamp-the-oracle-code/

RewdDudes3 karma

How do you think beauty standards interact with disabilities? I'd imagine it's overall negative, but regardless what are some changes/actions you'd hope to see both societally and within disability support groups to help overcome these effects?

PenguinRandomHouse2 karma

Beauty is often associated with desirability, wellness, and 'good,' which is super problematic, right? Because the pervasive idea is that disability is not beautiful (literally and figuratively). For me, having more stories of people who are comfortable and confident with who they are is one way to push against these standards. It's also awesome to see disabled people in fashion as models and designers.

Martinspire2 karma

Hi Alice, thanks for doing an AMA.

I'm a webdeveloper myself and am always curious how visually handicapped people consume the web. So how does this work out for you, what do you use and how easy/bad is that to use?

And most importantly: what can webdevelopers do to make it easier to browse their sites. I know there's a whole WCAG guideline, but thats not just for visibility. So whats most important for you to be able to consume the web easily? What do you often miss and what makes it impossible for you to do anything?

PenguinRandomHouse1 karma

There are a TON of disabled people, especially blind people passionate about accessibility and specifically web development. If you are on Twitter, please check out the hashtag #a11y (accessibility) to discover a bunch of accessibility experts. I would listen and connect with those folks. For instance, Lucy Greco https://webaccess.berkeley.edu/about/staff-bios

Chancey Fleet https://twitter.com/ChanceyFleet

Jennison Asuncion https://www.linkedin.com/in/jennison/

And you can find out more: https://www.nfb.org/programs-services/center-excellence-nonvisual-access

And https://cforat.org/

Megatheorist2 karma

What ideas are relevant to people with disabilities?

PenguinRandomHouse1 karma

I can't speak for all of us and this is a pretty impossible question to answer! I would check out my podcast for a cross section of disabled people who have a lot of amazing thoughts and ideas https://disabilityvisibilityproject.com/podcast-2/

tink2821 karma

I missed your AMA but I’m hoping you’d be able to give me your opinion on internet spaces that are dedicated to “calling out” people who are believed to be faking being chronically ill or disabled? Like here on reddit is a sub called r/Illnessfakers Most of the people they talk about are people considered to have an invisible disability. Do you think fostering/encouraging this kind of scepticism is bad for the disability community or is it good to point out people who take advantage of the system even with the risk of being wrong about someone faking it? On one hand people with invisible disabilities already have so much trouble accessing support they need and not being believed but on the other these people may be taking up resources someone else really needs.

PenguinRandomHouse2 karma

I was afraid of joining Reddit because of subs like that one! I HATE any speculation about a person's disabilities. I know many people who have been targeted and harmed by that online groups similar to that sub. I'd rather err on the side of someone receiving something than harassing and interrogating someone based on presumptions about their needs. No one can really know a person's needs by looking at them or interacting with them on a superficial level. Nor is a person obligated to defend or prove anything, especially to strangers when we know this information can be weaponized against them later on. The scarcity model shouldn't force us to hurt one another. For more, check out my interview with Dr. Doron Dorfman who has done research on this: https://disabilityvisibilityproject.com/2019/01/27/ep-43-disabled-fakers/

Arlais_Fale1 karma

My second question has to do with American Politics. Can you tell us a little about where your mind is at regarding this upcoming presidential election? And what are the things you're concerned about? And what are the questions we should be asking of our local and national politicians?

PenguinRandomHouse4 karma

I think there's such effort to suppress the vote by the President that it's frightening. This is happening with cuts in the postal service and happening at the state level where all kinds of shady stuff is happening that disproportionately harm communities of color. The pandemic is also making it dangerous for a lot of people to vote in person and there are people capitalizing on that to disenfranchise voters.

bishopslacey1 karma

I hope this message is not too late! What are your views on people living with epilepsy? While very able, they often have to deal with a lot of stigma and limitations that aren't necessary.

PenguinRandomHouse1 karma

I would mostly listen and learn from people with epilepsy. My views are not as important as theirs! I would highly recommend Dr. Aparna Nair, a scholar and person with epilepsy for starters. She wrote an entire series: https://wellcomecollection.org/series/XjlgkREAACUA_s3s

And here's her website: https://disabilitystories.com/

shootposter1 karma

I work in healthcare and my colleagues refer to any patient who presents in a wheelchair as “wheelchair-bound”. Is this offensive to wheelchair users? Thanks in advance

schnucken2 karma

I'm not Alice, but I am a wheelchair user. For me--and, I dare say, most would agree--our chairs are tools that allow us mobility and independence to work, socialize, shop, and adventure. Medical professionals are notorious for assessing quality of lifewith a disability quite negatively, and the term "wheelchair bound" implies imprisonment. In fact, it is freedom. You might check this out for a fun way to change that thinking: https://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchair?language=en

PenguinRandomHouse1 karma


PenguinRandomHouse2 karma

This is a term I hate--speaking for myself of course. Bound gives the sense that we are trapped or limited by them which as you know mobility aids are essential for freedom & independence. I prefer a more neutral, "wheelchair user" term to describe myself. And whenever you are interacting with someone, always ask how they prefer to be identified!

DrewMac3801 karma

Hi Alice! I have seen posts on Facebook and Twitter from you so I’m happy to see this here. I have a company where we provide opportunities for people with disabilities to create art that I print on shoes and apparel. They earn money when their design sells on our products. I’d love to talk with you to see if there is any room for a collaboration. Do you have an email that you’d be able to personal message me? Thanks!

PenguinRandomHouse1 karma

Thanks for asking but I am not really available right now for a collaboration like this. But thank you!

chewycapabara1 karma

Hi Alice! I'm a recent college grad diagnosed with a mental health disorder (clinical depression and substance abuse disorder - not active, but still a concern) a few years ago. As someone who's disability is very real but invisible, do you have any tips on how to go about (or if I should go about) disclosure in the workplace/romantic relationships/friendships?

I find that talking about it with friends and family has gotten easier, but it's harder to know how to go about communicating how my disability affects my performance in a work setting, and how to go about telling romantic partners about these challenges in a way that doesn't act as an immediate turn off. Thanks for doing this!

PenguinRandomHouse2 karma

It is TOTALLY hard, right?!? Even with an apparent disability, the need to disclose or explain stuff can be draining or anxiety-producing. I personally think identifying early on (in workplaces or relationships) might be helpful because 1) their reaction will let you know who they really are and you can decide whether they are a real friend or someone who cares about you and 2) people can at least start understanding you as a whole person and this is definitely part of who you are that you don't have to hide anymore. Again, there are always risks and it can be awkward or unpleasant. I would definitely seek out advice from other folks with mental health disabilities. There's also this website that might be of interest: https://www.invisibledisabilityproject.org/

skeeterou1 karma

I'm a producer/cinematographer for tv shows, and i shoot a lot people with disabilities. Honestly it can be tough initially when someone is letting a camera crew into their life. I do my best to really understand that, but it's still hard. What's the best thing someone like me can do to make you more comfortable? I mean, I have my things, but it's more about actually being able to show my true empathy and appreciation for people struggling and sharing their life with the world through television.

PenguinRandomHouse1 karma

I think giving the person as much agency in the process--considering the subject as a co-creator with you and to respect their feedback if they feel uncomfortable with something. Also, being very upfront about the theme and your approach because it's a huge risk for people to allow you into their lives when you have the control in the editing room. Giving people a preview of an early cut could also help so that if they see something that's a red flag they can let you know. In the end, you want people to be as proud of the end product as you are.

brokecollegekid691 karma

Hey Alice! Thanks for doing this!

I’m a big proponent of access for the disabled. I’m a grad student who was diagnosed with cancer half way through my program. I wanted to ask your thoughts with what your seeing that can be improved on for people with disabilities asking for help and ensuring access to help.

When I was diagnosed I called my dean in tears asking what to do and while getting treatment, my school was supportive in terms of accommodating things I needed (access to class recordings when i didn’t go to class, moving clinical rotations when my immune count was low etc). But now that I am finishing up I am only now seeing that there are entire departments at schools that work on creating accommodations for students with disabilities. I recognize I am lucky my dean was so willing to work with me, but also, I had no clue of the office of disability services should he had not been so accommodating. Do you think there’s a way to help bridge that gap?

PenguinRandomHouse1 karma

This is why community is so important because we're not alone and we can share our experiences and advice with one another. Many campuses have disabled student organizations or disability cultural centers. There's groups such as https://www.ahead.org/home

thisonetimeonreddit1 karma

Hi Alice. I'm really bummed I've missed this AmA, but I'm hoping maybe you'll check back.

Colourblindness is a disability most people overlook.

What do you think is a good way to get game developers to add colourblindness support to their games?

Here's what I've tried unsuccessfully with BHVR, creators of DeadByDaylight:

-Emailing the company (no response)

-Tweeting the devs individually (no response)

-A daily tweet campaign attempting to gain visibility through repetition (no response)

How do I get through?

PenguinRandomHouse2 karma

Hey there! Thanks for your question! There are a bunch of disabled people in gaming who are also working in the industry or advocating for change. There's one person, Ian Hamilton, from the UK who has done a lot of work in this area who you might want to contact: https://twitter.com/ianhamilton_ There's also https://ablegamers.org/ And probably lots of other online communities just for disabled gamers who are equally passionate as you. Here's an interview I did with Cherry Thompson, another person you might be interested in: https://disabilityvisibilityproject.com/2020/02/24/ep-71-games/

poxto281 karma

Hi Alice.

I've struggled with chronic illness since at least high school, and after being diagnosed I struggled to learn how to advocate for myself with accomodations both at school and at work, especially since my illnesses are largely invisible. How does someone learn to advocate for themselves, and are there resources explaining how to fight against people or institutions who believe accomodations aren't necessary?

PenguinRandomHouse2 karma

I'm so glad you asked! I'm about to publish a blog post containing a resource by Erin Gilmer called Preface to Advocacy which gives some advice to people who want to get started but not sure how. Here's a link to the Google Doc and I hope it helps! https://docs.google.com/document/d/1SDomTEAcPhlM3DgZ73l4YGj9Q9N6liNjfKWHTQMmrZU/edit?usp=sharing

And having an invisible disability can be really tough in a world that constantly interrogates and doubts your access needs. Just know you are entitled to the same rights as other disabled people. The Invisible Disability Project might be a website to check out: https://www.invisibledisabilityproject.org/

Deepspace9odo1 karma

Does this book cover anything related to autism spectrum disorders?

PenguinRandomHouse1 karma

Definitely a few autistic & neurodivergent folks in the book!

TommyVienna1 karma

My psychiatrist in Oregon told me to apply for full disability due to my levels of ADHD and generalized anxiety disorder. I moved to California and my psychiatrist here doesn't support me in that effort. I feel torn but I'm going to keep pursuing full disability. Do you have any advice for me?

PenguinRandomHouse1 karma

This is not my area of expertise, sorry! Perhaps try your local independent living center?

SmattaHead7111 karma

What has the Trump administration done to or for the disability culture, good or bad, and what can we expect, better or worse, if Biden should prevail?

PenguinRandomHouse1 karma

Trump has been detrimental to the disability community and so many other marginalized communities. We absolutely have to vote him out. Biden's disability plan is a zillion times better than anything Trump has laid out (although I was also a fan of plans by Julian Castro & Elizabeth Warren too): https://joebiden.com/disabilities/

chillmanstr81 karma

Hello Alice, I had a question regarding anxiety and depression as disabilities. I recently went through our company’s yearly training and one of the courses was on disabilities. However there was no mention of mental health being a disability.

There are days when I’m just so anxious I feel paralyzed and very unproductive. My managers are aware of my anxiety and are supportive and encouraging.

While I’m not currently at any spot where this is significantly interfering with my life, I have had these spots and know I will have them again.

I guess my question is, is having a diagnosed mental illness a possible disability currently? (USA) I don’t like using my few PTO days for when I have a series of days like this, and just wondered what your thoughts are in situations such as this, where a person can, for all intents and purposes, be incapacitated by anxiety/depression but it’s not something that’s an ongoing disability? TIA

Edit: just saw your response to neonbluefox but if you could expound on that I would appreciate it!

PenguinRandomHouse2 karma

It sure is covered under the ADA because your disability impacts one or more of your major life activities. One resource that might be helpful regarding interactions with your managers, your rights under the ADA, and any accommodations you may need in the future is the Job Accommodation Network https://askjan.org/

himix1-1 karma

If hand signaling for the hearing/speaking impaired was the same all over the world; could we use it as an international language instead of english?

PenguinRandomHouse1 karma

That's not how language and culture works as I understand it. Deaf people are diverse from all over the world. They have unique signs because they come from unique cultures.

TheD1v1s1on5-1 karma

A person I know said he got depressed so much that he's disabled. Can it be certified?

PenguinRandomHouse1 karma

This is not my area of expertise but I hope this person gets the help they need. And one can be disabled with our without certification. Not everyone has the money to get testing or a diagnosis and yet their disabilities are just as real as someone with a letter from a doctor.