Living, quietly bleeding

It is okay to grieve and mourn the movement and health you have lost over the years.

It is okay to believe that you are ‘too disabled’ to live a proper life.

i KNOW how frustrating it is that the loud majority of ppl with hEDS make it look like living with a mild cold, but i still need yall to remember that the other group of people also exist.

ive seen a couple different posts circulatating where people are bitching about ppl with hEDS hijacking thier posts to talk about their "mild disability", and while i COMPLETELY AGREE that you should make your own damn post i dont want people seeing that and assuming hEDS = mild joint pain.

for some people thats all it is, but for the rest of us poor fuckers who cant walk, sit up, work, or take care of ourselves because of how severe it is, we see you say that shit, and so does everyone else. you can bitch about the "spoonie community" as much as you want, i dont care. i complain about it too, id just be more careful about mentioning specific disabilities.

people with severe hEDS deserve to be taken seriously, especially because the larger EDS community barely fucking mentions us or just outright pretends we dont exist.

"But you'll have more money!" does not completely put this to rest for me. Neither does "Buy care insurance!" Even if I can afford direct personal care, who is going to advocate for me to get it? Who is going to navigate bureaucracy for me when I'm 80?

"If you do have kids, there's no GUARANTEE that they'll take care of you when your old!" That's true, but doesn't solve my problem.

Not the “oh Einstein was probably autistic” or the sanitized Helen Keller story. but this history disabled people have made and has been made for us.

Teach them about Carrie Buck, who was sterilized against her will, sued in 1927, and lost because “Three generations of imbeciles [were] enough.”

Teach them about Judith Heumann and her associates, who in 1977, held the longest sit in a government building for the enactment of 504 protection passed three years earlier.

Teach them about all the Baby Does, newborns in 1980s who were born disabled and who doctors left to die without treatment, who’s deaths lead to the passing of The Baby Doe amendment to the child abuse law in 1984.

Teach them about the deaf students at Gallaudet University, a liberal arts school for the deaf, who in 1988, protested the appointment of yet another hearing president and successfully elected I. King Jordan as their first deaf president.

Teach them about Jim Sinclair, who at the 1993 international Autism Conference stood and said “don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

Teach about the disability activists who laid down in front of buses for accessible transit in 1978, crawled up the steps of congress in 1990 for the ADA, and fight against police brutality, poverty, restricted access to medical care, and abuse today.

Ed Roberts was one of the founding minds behind the Independent Living movement. Roberts was born in 1939, and contracted polio at age 14, two years before the vaccine that ended the polio epidemic came out (vaccinate your kids). Polio left Roberts almost completely paralyzed, with only the use of two fingers and a few toes. At night, he had to sleep in an iron lung, and he would often rest there during the day as well. Other times of the day, he breathed by using his face and neck muscles to force air in and out of his lungs.

Despite this being the fifties, Roberts' mother insisted that her son continue schooling. Her support helped him face his fear of being stared at and ridiculed at school, going from thinking of himself as a "hopeless cripple" to seeing himself as a "star." When his high school tried to deny him his diploma because he had never completed driver's ed, Roberts and his mother fought the school and won.

This marked the beginning of his career as an activist.

Roberts had to fight the California Department of Vocational Rehabilitation for support to attend college, because his counselor thought he was too severely disabled to ever work or live independently. Roberts did go to school, however, first attending the College of San Marino. He was then accepted to UC Berkeley, but when the school learned that he was disabled, they tried to backtrack. "We've tried cripples before, and it didn't work," one dean famously said. The school tried to argue the dorms couldn't accommodate his iron lung, so Roberts was instead housed in an empty wing of the school's Cowell Hospital.

Roberts' admittance paved the way for other disabled students who were also housed in the new Cowell Dorm. The group called themselves "The Rolling Quads," and together they fought and advocated for better disability support, more ramps and accessible architecture like curb cut outs, founded the first formally recognized student-led disability services program in the country, and even managed to successfully oust a rehabilitation counselor who had threatened two of the Quads with expulsion for their protests.

After graduation from his master's, he served a number of other roles- he taught political science at a number of different colleges over the years, served on the board for the Center for Independent Living, confounded the World Institute on Disability with Judith E. Heumann and Joan Leon, and continued to advocate for better disability services and infrastructure at his alma mater of UC Berkeley.

Roberts also took part in and helped organize sit ins to force the federal government to enforce section 504 of the Rehabilitation Act of 1973, which stated that people with disabilities should not be excluded from activities, denied the right to receive benefits, or be discriminated against, from any program that uses federal financial assistance, solely because of their disability. The sit-in occupied the offices of the Carter Secretary of Health, Education and Welfare building in San Francisco and lasted 28 days. The protestors were supported by local gay rights organizations and the Black Panthers. Roberts and other activists spoke, and their arguments were so compelling that members of the department of health joined the sit in. Reagan was forced to acknowledge and implement the policies and rules that section 504 required. This national recognition helped to pave the way for the Americans with Disabilities Act in 1990.

I just found out about the Stay Up Late campaign to advocate for people with intellectual disabilities to have the right to go out in the evening and not have to be in bed by 8pm

I learned about it from this video:

And I found the website for the campaign which is here:

pride month is when you're SUPPOSED to be angry. it's a celebration AND a riot. that was the best time to get angry. second best time is now. but it's not wrath month. let disabled people have this.

please get angry with us. please fight with us! we are both losing our rights, if we ever even had them to begin with. please don't talk over us, especially during our own pride month.

did you know over 10,000 people die a year while waiting to be told whether or not they can receive disability benefits?

did you know while being provided disability benefits, disabled people cannot have more than $2,000 total in their bank account? the average rent for an apartment in the united states, as of last month, is $1,995. per month.

Since July is Disability Pride Month

(as opposed to every other month when we're all demure about disability rights /gentle sarcasm)