I’m launching a podcast, Call Me Disabled, with
@acast
🥳 a conversation on the disabled identity, discussing the various journeys of identifying as disabled, and all the inbetweens.
Asking the world, so subtly, to drop the euphemisms, please call me disabled 🥰
people really be like “don’t worry about the coronavirus, you’ll be fine if you’re not elderly or vulnerable” whilst disabled people & the elderly look on like ....ok then....
I got my nails done today as a treat for something. Walked in with my mask, the nail tech immediately asked if I would like her to wear a mask. I said, only if you’re comfortable, she was like, “absolutely” will 100% be coming back for that reason. All it takes
Chronically ill people really have like 4-5 useable hours in a day (on a good day) and people are still set on insisting we all have the same 24hrs? Nah
my double vaccinated 19 year old sister officially has long covid and currently has similar care needs to me, a - full time disabled person -
can we please stop with the whole “it’ll only be a mild case” bs, how is getting long covid a mild case??
It’s ableist to make disabled people who need accessible seating pay a higher tier at an event or concert because the accessible seating is closer to the stage.
I will die on this hill.
it’s not “post-covid difficulties” it’s post viral acquired disabilities. I’m shocked that people acquiring disabilities from having covid are being called DIFFICULTIES. These are whole ass disabilities!
ok I have to say this
If Sia’s heart was in the “right place” or she was “well intentioned” when first creating this film, I don’t think she would have lashed out at the autistic actors in such a hostile & harmful way
I REPEAT: Disabled people are 20% of the population, nearly 1 in 5 have a disability.
Do you know what’s not realistic & seems SOOO forced?
Not including us in media, films & games
This is the accessibility disabled people have been fighting for at events. We’re given crumbs to fight over, and non-disabled people get it handed to them overnight
The UK’s first socially distanced gig is happening now in Newcastle with
@samfendermusic
headlining, and where attendees have their own private viewing area with 2m of space between them. Here’s what it looks like
#samfender
#unityarena
Interesting how a certain brand of people don’t want vaccine passports, but then always expect disabled people to have proof of our disabilities and be “registered disabled” 🤔
I just saw that flight attendant on tiktok tell her 7 million followers to request a wheelchair if the line is too long bc “you can’t be denied a wheelchair” or to fake an injury.
I am swearing inside my head I cannot believe this. I cannot believe this.
The vaccine saved her life 100%, but getting long covid is not “it’ll be a mild case” at all.
She’s having to adapt her life to being ill, today she couldn’t walk without feeling faint?
Tired of no hospitalisation/death seen as a success, this isn’t a success??
Non-disabled people you need to be showing up for disabled people and grieving with us right now.
If you didn’t see the statistics released yesterday, 6/10 deaths from covid are disabled people.
Check in with your disabled friends. Show up for them.
Hey
@tesco
why did you send a delivery driver who has Covid-19, a positive test THAT DAY, to my grandma’s house (a high risk disabled person) to come into her house and delivery her groceries?
Disabled people in Russia are unable to get their normal life saving medications due to sanctions.
A Russian friend’s daughter has seizure meds from the EU, they no longer have access to them.
Heartbreaking.
a hill I’m beginning to stand on more and more these days is that many invisible illnesses aren’t actually that invisible, it’s just non-disabled people don’t pay attention to the stuff that is visible
noticed it’s invisible disabilities week, and just a little reminder that i personally believe that we deserve better than the word “invisible” when describing our disabilities not visually perceived by non-disabled people
Especially knowing how watched she is currently and how much sway she has, I hope others take note of this.
If the institutions refuse to provide accessibility, I hope celebrity allies are reminded they can step up and have the means to do it themselves
a reminder for non-disabled people that diagnoses are viewed as a privilege in the disabled community & if a disabled person does happen to have one, they likely fought like HELL to get it
diagnoses are not an easy thing to get
Alt text isn’t for inside jokes, additional story or photo creds. Much like how captions aren’t there to add in jokes, memes or expanding m story.
It’s there to communicate content in a different way, not as a bolt on! It’s not an expansion pack! Please don’t treat it as such 💜
There was this ongoing joke from those around me as I became increasingly chronically ill as a teenager that I was “working my way through the dictionary” but I think people really forget that once your body gets sick, it’s very normal to acquire more illnesses
watching my disabled friends one by one burn out from the added trauma of being a disabled person in a pandemic in which you’re treated as disposable is, tough
I read something that said “people want disease to kill you, or they want you to return to good health. When you stay sick, compassion can fade, with friends, family and medical professionals”
Which reminded me of the importance of identifying as disabled when chronically ill
This has unsurprisingly launched into beyond my own audiences timelines, so somethings to note: the UK has a heatwave, the “if you’re confortable” was in concern towards that, we don’t have aircon. Previously I have just said yes please in situations like this. Again, UK based
45% of people with fibromyalgia in a study had ADHD (so much so that they recommend those with fibro get tested for ADHD)
And there’s been a proven link between EDS and being autistic
Chronically ill babes, this is a nudge
If you’re going to talk or make a piece about brain fog through the lens of the pandemic, you need to include the perspective of chronically ill/disabled people people with brain fog
the cognitive dissonance some non-disabled people have over “destroying a disabled person’s mobility aid is not violent or assault, it’s not like they’re being physically harmed”
… it’s like, ok, ima give u 2 seconds to just rethink your statement
PSA: Non-disabled people, stop buying medical supplies that disabled/immunocompromised people NEED bc you’re panicking.
Do your research.
Especially do your research on masks & different types.
You’re likely just wasting CRUCIAL limited supplies by buying medical masks.
The TikTok community of designers are doing something incredible at the moment.
A disabled user with Parkinson’s posted about not being able to pick up their meds.
So a whole community of designers are 3D printing and creating an accessible pill bottle design. I’m in awe.
It will ALWAYS be better to have children ALIVE and doing remote school for a few weeks, than MASS post viral illnesses amongst a whole generation. Setting them up for a lifetime of health issues.
I’ve lived that life, let me tell you about it 🧵
I made people on tiktok angry bc I agreed that asthma is a disability lmao.
apparently being unable to breathe everyday isn’t a disability according to the non-disableds ✌️
Let me tell you about my recent transatlantic flight where I needed a wheelchair, desperately.
1. I was treated like cattle and a burden.
2. I was forgotten.
3. The baggage guy had to push me on the plane bc they are SO UNDERSTAFFED RIGHT NOW
4. The wheelchair line was 2hrs long
if non-disabled people’s first thought when they learn about a disabled person’s story was “ok what can I/we do to dismantle the ableism they faced” rather than “wow I can’t imagine living like that! I’d rather die!”
The world be a much better and accessible place
Please see my disability. I want you to see my disability. I need you to see it so that I can be properly accommodated with the right accessibility, so I can fulfil my potential, so I have equity.
Trying to “see past my disability” only takes away the tools I need. Gosh.
my favourite thing about chronic illness is how much medical tv shows portray that doctors will do EVERYTHING to “cure” a patient
so healthy people cannot comprehend why we’re still sick 😌
I go by “useable hours” now rather than “spoons” it feels so much more mature and people GET what I’m telling them now which is nice
“Like oh I don’t have enough useable hours for that right now” !! See
The majority of people in these replies are lovely, thank you. We’re doing ok❤️
For the more annoying lot: Stop asking if my sister had pre-existing conditions, she didn’t and even she did why would matter? Eugenicist. I’ve 0 tolerance for any bad word said about her, blocked
If you come into these replies either implying my sister is careless, telling me some antivax bs, mansplaining or being condescending you’re getting blocked (and maybe a “f off” as a treat)
An unpopular opinion perhaps in the chronically ill space, but I personally don’t like warrior talk.
Aside from other issues, it’s always been used to almost justify suffering or create an expectation of myself from others that I can deal with more than I actually can
How can disabled people be 20% of the population, but 60% of covid deaths, and yet forgotten about in the vaccine list.
I have 0 to no hope in this process. I am going to be absolutely forgotten by my GP and I know it
my baseline useable hours in day is around 5-6:
1hr self care and chores
1hr food making
3hr work/socials/hobbies
currently it’s around 2-3, but we don’t need to talk about that 👹
I cannot EXPRESS how understaffed wheelchair attendants & general access staff are at the moment. IT’S A PANDEMIC. They are all bloody sick. Philadelphia airport DIDN’T HAVE a wheelchair attendant for my flight, the American Airlines baggage staff STEPPED UP, THEY ARE NOT TRAINED
we talk a lot about how disabled people don’t have marriage equality, but the link between the intersection of queerness and disability is never quite grasped
queer disableds don’t have marriage equality
so do queers actually have marriage equality?
I have one disposable respirator mask left. ONE. I haven’t been able to get my hands on another one.
I wasn’t able to get a Cambridge Mask etc bc costs.
Give us immunocompromised a chance to get the supplies we need, god damn
Accessible seating tickets should be the same price as either standing room only or the lowest tier.
If disabled people can only get one type of ticket, and that price is hiked up due to location to the stage, it’s purely taking advantage of us
the terms “bedbound” and “housebound” are very different to “wheelchair bound”.
I am often bedbound/housebound because I have no other choice, but my wheelchair gives me choice and independence
The funny thing is, the people who may try this “airport hack” (using a wheelchair to skip queues) will likely get stuck in the long wheelchair waiting lines, forgotten about, herded like cattle, and will probably dip and realise how inaccessible access airport services are
Did you know that a lot of disabled students have to buy a letter from their GP (£20-30) to be able to receive accommodations?
I had to do this for EVERY university project I needed an extension for (all of them, 4 a semester)
How is that a level playing field?
Video of 2 clips of Rodrigo on the red carpet with a blonde white women as her ASL interpreter. The woman interprets the questions and OR’s answers. Laverne Cox asks questions in first clip, second is someone from ET asking question. CC: OR: religiously I like watch everyone’s
If you compare mental illness to physical illness and wish that mental illness was “treated as good as physical illness”
Oh boy do I have some news for you
So I saw the Frida Kahlo (2020) doc tonight and it took them almost 1hr15 to mention the word “disability”. The film was 1hr30 long.
An “expert” joked about her having Munchausen's and using her surgeries for attention. That was my last straw.
I’m saddened and disappointed.
5. I got herded into a cart at Heathrow, plopped into a massive seating area, there was ONE wheelchair every 10-20 minutes. With a queue of 30+ people in arrivals. I PUSHED myself to walk and get my heavy case. I figured out it was best to put myself through that pain, than wait
“US Paralympic athletes will receive equal pay for the first time at the Tokyo Olympics”
I hate how the media around this is “we should be grateful” rather than, this is “the bare minimum”
Those with post covid symptoms, difficulties or long covid, whatever they’re telling you it is: The disabled community welcomes you completely. If you need community to guide you, we’re here
I really don’t appreciate non-disabled/non-chronically ill people using “brain fog” when they simply have no idea of the weight that symptom carries for us
Brain fog isn’t a cutesy piece of slang for you to use folks
if your disabled friends have seen you ignore covid regulations & safety advice, whether online or offline, don’t be surprised or upset if they break ties with you
I constantly see events do this. Heck, we just got accessible Billie Eilish tickets in which we had to pay £95 simply because accessible tickets are close to the stage.
If I could pay £60 for the lowest tier I would, but my legs don’t work.
Ableism
been chronically ill most my life and still don’t know the appropriate time to seek medical help/get an ambulance etc, I really will just “I’m probably overreacting” myself on my death bed lol
I think if non-disabled people can understand a pug’s varying energy levels, they can understand my chronically ill self’s varying energy levels
❌ no more excuses ❌
We’re going to see more and more ableism towards chronically ill people in this stage of the pandemic and onwards. It’s going to get worse as chronic illness becomes more of a scapegoat for everything. If you see this, you call it out. Squash any narrative like this
Will also mention that between my useable hours I’m probably having a resting hour, or breaking after 15 minutes of working to rest. It isn’t linear and spread out over 8-10 or so hours in a day! Like I can’t full throttle do that all in one go, heck no
If you’ve never sat in the wheelchair waiting area with less than an hour to catch a flight, go through security, waiting, hoping, that you haven’t been forgotten about, sitting in pain, triggering anxiety, whilst watching a massive queue in front of you? Idc about ur opinion
pandemic life (especially as a disabled person) in 2022 somehow feels harder, stranger and more painful than pandemic life in 2020
at least everyone wasn’t ignoring the problem then
Non-disabled people don’t like vaccine passports because they’re being treated like disabled people.
Showing private medical information in order to go somewhere or do something? It’s almost like non-disabled people demand this from disabled people constantly
do doctors ever take a moment to consider that maybe anxiety isn’t the root of a patient’s problem, maybe it’s the medical trauma and the whole “doctors not listening to them” their whole life that gives them anxiety
I really don’t think non-disabled people realise just how “policed” disabled people are, and how exhausting having constantly daily hoops to prove we’re disabled truly is
ok non-disabled people here are forgetting that even if vulnerable/disabled people don’t get Covid19, it STILL impacts us so much
Medication. Food. Care we need. We rely on services. This all gets A LOT harder for us, when it’s already hard enough as it is
*Deliver.
I’m fuming. Absolutely fuming
@tesco
Why are you letting delivery drivers deliver with covid?
Driver informed my gran, but still stood a metre away, unmasked telling her this
I talk about this a lot but I don’t care. My disability advisor told me it would be easier for me to DROP OUT of university RATHER than be accommodated. These are the barriers disabled students face ⬇️
Here is what disabled students regularly deal with. There are so many other accessibility issues that aren’t easily summed up in a photograph, and then we wonder why unemployment rates are astronomical among disabled people. This is
@SarahMarieDS
at
@UniOfHull