Carey said he had wanted Parker's support for legislation requiring staff in state and private facilities to report incidents of suspected abuse or neglect of vulnerable people to a 911 operator.
“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2
Let’s talk about THAT NPR article. I’ve taken a few days to grieve for those forced into dangerous situations by spouses/family who would rather go back to normal than protect their vulnerable loved ones. Where has kindness gone & how do we stop treating ppl as disposable?
I wish I could say I was shocked to read that piece - but after 4 years of being abandoned by more people than I care to admit - little surprises me anymore. We were “all in this together” for a few weeks - and then people got sick of it.
People don’t want to change their behaviours. For many healthy & privileged people the pandemic was the first time they ever had to make sacrifices or change their “normal”. Most didn’t like it.
Some people were empathetic enough to see the isolation from stay at home orders and connect it to the lives of disabled people. I had a number of people reach out and say things like “wow is this what your life is always like?”
Of course my answer was “Yes”. My chronic illnesses isolated me long before the pandemic - Covid only intensified that isolation. When people would draw parallels I felt great hope - I imagined we would move forward to a more inclusive society.
Instead what has happened is people got tired of having to make sacrifices. Government & public health told them that they no longer had to protect the vulnerable & that it was OUR responsibility to shield & isolate.
So they stopped masking & went back to normal.
There were some holdouts - usually people who love or care for a vulnerable person. But as it became clear that herd immunity wasn’t coming, that Covid wasn’t going away…. Even those people grew resentful of the modifications to their daily lives.
They started pressuring their vulnerable loved ones to stop worrying so much & go “back to normal”. Many started doing high risk indoor actitivies and simply lying about it - while others wrote articles for NPR.
The sad reality is that people now view the vulnerable as THE people who ruined their lives. After all - mask mandates & stay at home orders were sold as a means of “protecting the vulnerable”. People are angry their “normal” was altered & they’re not being subtle about it.
I would argue they should take that anger and direct it where it belongs - at government and public health officials who’ve bungled the messaging around Covid from the very beginning. The people who lied & downplayed the risks & cost us our best chance of containing Covid
Of course most leaders and public health officials are telling people what they want to hear. That the threat has passed, that we’ve “defeated Covid” and that they can party like it’s 2019. As a result people aren’t angry at them - they’re angry at the vulnerable instead
They’re angry at disabled people for trying to protect themselves, at advocates for reminding them that we’re STILL in a pandemic and at the sight of a respirator. These things & people remind them of that time in their life when they couldn’t do what they wanted.
1/2
They don’t want to be reminded of the few weeks or months they had to sacrifice for other people. They want their “normal” back. And they definitely don’t want to consider they too could end up disabled like us “vulnerable people”.
So they buy the lies despite overwhelming evidence that the threat is still with us. And they direct their anger towards disabled and vulnerable people instead. They put us at risk - often deliberately - so that they can stay in their denial bubble of normalcy.
I’m sick of it. It’s made life much harder for so many people and it didn’t have to be this way. We understand Covid & how it’s spread and we have the tools to keep everyone safe. The reason people don’t want to use them is that they fear change & adaptation.
They also don’t see themselves as vulnerable. They still see Covid as only an issue for those “other people” that they think they’re so much better than. So they do nothing to protect us.
How do we change this? I don’t know anymore. Given most of us can’t even get our loved ones & doctors to take steps to protect us… what chance do we have of convincing strangers?
I don’t have the answers but I do know that writing articles shaming your vulnerable spouse is NOT the way. Lying & exposing vulnerable loved ones to reinfection is NOT the way. Refusing to take any precautions & getting Covid over & over is NOT the way.
We can clean & ventilate the air we share. We can mask in high risk settings. We can demand mask mandates in hospitals, free access to tests & better vaccines & treatments for Long Covid. There’s much we CAN do if we would stop othering people & admit there’s a serious threat
For now the best I can do is protect myself & those around me and continue to tell stories of challenges I face. I encourage others within the disability & Long Covid communities to be ready to welcome many new members - our ranks will keep growing in the ‘let ‘er rip” era
We need to remember how scary it can be when you first realize you’re chronically ill - and we need to have compassion for those joining us regardless of how or why they ended up here. When we figure out how to work together as a collective voice - we will be unstoppable.
I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?
This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.
They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.
Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.
Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.
Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.
Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.
I don’t know who needs to hear this - but it’s normal to be anxious if you’re at the ER. Especially during an airborne pandemic. HCW’s should not be slapping an anxiety label on patients who request they wear a mask.
A person sick enough to need the ER is too sick to handle Covid. Instead of judging them just put on a mask. It’s a kindness and it’ll protect you too!
This #LongCovidAwarenessDay I want to say sorry. I’m sorry to everyone who’s joined the ranks of the chronically ill & disabled because our leaders, public health and fellow citizens refuse to take Covid seriously.
Those of us who were disabled before the pandemic could see this wave of chronic illness coming - and many of us have been screaming from the top of our lungs the last 4 years. Begging people not to take their health for granted & to wear a mask and protect themselves. Warning them that there are no do-overs once you become chronically ill.
Unfortunately very few people are listening - and many won’t understand the true devastation of #LongCovid until it directly impacts them. At which point it’ll be too late.
Despite seeing these waves of disability as an inevitable consequence of “let er rip” Covid strategy - one thing I did not see coming was how many people would willingly embrace not only ableism - but full on eugenics.
People in my own life who were previously kind & supportive have become cruel and angry. The masks have been ripped off. They don’t hesitate to tell me that they blame me for the restrictions placed on them in the early days of Covid - and that they will never again allow their freedoms to be infringed on in the name of protecting the vulnerable. One even went as far as to say “you’ve been sick for years - just die already.”
People who say these things don’t understand what disabled people understand all too well - your health is not a permanent state. Everyone will become disabled eventually…. Some of us earlier than others. Also many people who think they’re invulnerable are already vulnerable and don’t even know it.
Yet rather than adapting behaviour and pushing for a new normal that makes the world safe for everyone - most temporarily abled people have instead doubled down on hateful eugenics talking points and want us to stay home forever (or worse - die). It needs to stop.
Covid is airborne and we all share the air. “You do you” individualism is quite literally killing people. We need to start caring about the air we share as this will lead to a healthier society for everyone. Until then we need to mask up. It’s not hard, it’s incredibly effective & it might save someone’s life.
If you want to read more about the “friend” who told me I should “just die already”… I wrote about it & the behaviour changes I’ve noticed throughout the pandemic here: https://disabledginger.substack.com/p/just-die-already
Lovely mastodon savvy folk… I’ve been writing about #covid#disabilityrights and access to safe healthcare for the last number of months. Finally starting to publish & wondering best way to share on here. Is it still hashtags? I know there’s a wonderful #CovidCautious community here - are outside links ok? Thanks in advance!
"Severely disabled women are left out of conversations on Women’s Rights, and trans women are also excluded from these conversations. Be sure that we uplift these populations today."- Andrew Gurza
Families say a shortage of education assistants and a lack of funding from the Ministry of Education has left many #StudentsWithDisabilities with very few supports in school.
The #WheeliePeeps are sick and tired of people taking their #parking spots. After commiserating, they decide to do what they do best – #RaiseHell! Things get heated when some unassuming government employees show up to work to find their parking lot has been overtaken by 100s of #wheelchairs.
Hand controls, according to #DisabilityRights Advocates, generally consist of a mechanism that allows drivers to accelerate and brake using one hand, and a “spinner knob” that allows for steering with the other hand.
Loveness, a member of the #DisabledWomensSupport Organisation, is one of a coalition of campaigners representing 20 organisations of persons with disabilities (OPDs) who had come together to launch #EqualZimbabwe. This campaign is calling on the government to create and implement new legislation that will guarantee #DisabilityRights in the country. There are estimated to be more than 1.4 million #PeopleWithDisabilities in #Zimbabwe
If someone decides to take an early retirement before the age of 65 in #Quebec, their retirement #pension will be reduced to compensate for receiving benefits for a longer period.
The issue for Bélanger and thousands of others in her situation is that people who are unable to work because of a #disability also face a similar penalty — come 65 years old, their retirement pension can be slashed by up to 24 per cent.
BRILLIANT, MOTIVATED, AND FIERCELY fabulous, activist Eddie Ndopu tells the story of his journeys: South Africa to Canada to Oxford to his role on the world’s most glittering stages speaking out for the rights of people with disabilities. B PLUS
If your customer service requires a person to call in rather than using written communication media, it is not accessible to people who are autistic, have social anxiety, are hearing-impaired, or have other communication or sensory impairments. You are telling your customers we don't matter to you if we are disabled. Is that really the kind of message you want to send?
KFAI’s Sam Jasmine interviews me on her show, "Disability & Progress," about my new memoir, Freeing Teresa:
Franke discusses her transition to advocating for #disabilityrights. She shares the story of her sister Teresa, who has #Downsyndrome, and how she fought against the idea of placing Teresa in a nursing home. Franke emphasizes the importance of speaking up in similar situations and shares the positive outcomes for Teresa, who is now an artist and author. https://kfai.org/program/disabilityandprogress/