Remembering Judy Heumann, Camp Jened and the Disability Civil Rights Movement

An excerpt from Crip Camp, a documentary detailing how Camp Jened, a summer camp for disabled youth resulted in a large-scale disability civil rights revolution.

Judy Heumann: I would like to say that, um, I am glad to be here tonight, but, um…

[Looks to the side, smiling. Exhales heavily. Bites her lip, shaking her head as if about to cry.]

Crowd member 1: It’s all right.

Crowd member 2: We’re behind you.

Crowd member 3: Yeah.

Crowd member 1: It’s all right.

Judy: You know, on the one hand I’m feeling like I should say everything is wonderful, [voice starts to break] and I don’t feel, um, that’s at all what we talked about.

And I’m very tired of being thankful for accessible toilets [crowd laughs]. I... I really am tired of feeling that way, when… I basically feel that, um.

If I have to feel thankful about an accessible bathroom, when am I ever going to be equal in the community?

This woman is one of the many faces of the disability civil rights movement. Judith Heumann was the Special Advisor for International Disability Rights at the US Department of State for seven years under Obama.  She was also a 20-year-old who attended camp Jened, a camp for disabled people during the seventies.  Alongside Camp Jened’s other massively influential attendees, she was a key organiser for the 504-sit ins in 1977. This event is widely considered the key protest in defining disability as a social and political movement. 

I decided to re-watch Crip Camp on Netflix after hearing about Judy’s death on the 4th of March 2023. This was roughly a month before the 46th anniversary of the 504 sit-ins in April: a protest that’s still the longest occupation of a federal building, spanning almost the entire month of April.  The anniversary takes place during the middle of semester one for uni.  This is around the time my world view starts to shrink, as consecutive assignments bunch together. This is also when Judy was bearing the burden of leading the disability civil rights revolution that allows me to be here.  When I take the bus in the morning, I look at the designated area for disabled people.  It is a view that, for a non-disabled person in a world without camp Jened, would’ve been unfeasible.  Normalities such as accessible transportation, kerb ramps, a university Academic Adjustment Plan (AAP), all inconceivable. Yet, this is the reality I am in that I am so grateful for. 

I am thankful for accessible toilets.  I’m relieved when a family member doesn’t ask about my health. I am hurt when disability is the butt of the joke, as is often the case.  I’m enamoured by how Judy, being the same age I am now, was at Camp Jened getting everyone to decide whether or not they would eat lasagna. At how Judy, during the 504 sit-ins, was rallying each individual to stay just one more day.  One day at a time.  People without a backup ventilator.  People in pain sleeping on the floor, without showering or access to consistent food.  People facing scare tactics from the F.B.I, with 3 a.m. fire alarms and bomb scares.  

What Judy brought to people’s lives was disappointment.  More specifically, the fear of disappointing her.  She expected what is now standard.  During her time as president of Disabled in Action, she organised a protest that cut off all central streets in front of Nixon headquarters.  She rallied against the horrific conditions disabled people experienced in institutions.  She knew what was owed to us as disabled people individually and as a community. This is why I see Judy everywhere.  Not as an objectified, important disabled person here to give me a pep-talk on how I can overcome my disability.  As someone who expects what is deserved.  I see her fatigue when I advocate for myself and my needs to an overworked doctor.  I see the myriad of helping hands supporting and empowering her.  I can smell the pines and feel the hot grass of Camp Jened. 

Camp Jened is a real testament to how a mutualistic society is possible and preferable.  Ironically, it is where disability both thrives and dies.  It proves the social model of disability, that disability is created and perpetuated by non-disabled people.  Our minds and bodies are not a source of shame or even that much of a big deal, for that matter.  Conditions like incontinence become inconsequential. Humour is not hierarchical, merely kind-hearted, and actually funny.  It is a community that values people. 

For many people experiencing disability, this camp does not exist.  Identifying as disabled is a branding iron for ostracisation.  Where ableism is pervasive, it is not always conducive to safety. Crip Pride however is not limited by identification or binaries between disabled and non-disabled.  It is a summer camp where you can be a kid. Judy’s legacy is for everyone to benefit from and dwell in.  It is our history and legitimacy.  It is also not the end of our progress, or our story. Now, it is standard and expected.