Fight Ableism: My Work
I am a disability advocate, focusing on disabled poverty, Healthcare disparities, Healthcare bias with treatment of marginalized patients, and rare disease awareness. I have been interested in disability rights and advocacy since 2018.I make art for mobility aids that celebrates disability pride and disability awareness, and I also blog and make YouTube workshops to educate people about living with chronic pain & dealing with abelism. I aim to uplift disabled and chronically ill people with my mutual aid organizing & community building, and love supporting disables artists, authors, and creators. I want to raise awareness for common issues disabled and chronically ill people face in the medical system such as medical debt, medical malpractice, and discrimination.Watch my workshops by following Zebra Support Network on Eventbrite, they are fully accessible & always uploaded to YouTube. Find my Facebook page "Fighting Abelism" where I also run workshops. I am quitting school to study disability rights on my own, and focus immediately and solely on my activism. I plan to self publish both books and small zines, as well as run free and paid workshops and classes. I believe in empowering the lives of disabled and chronically ill people using community care, education, acceptance, and awareness.
Fight Ableism Programs
- Medical Neglect, Abuse, & Malpractice Awareness Writing Project
- Medical Neglect, Abuse, & Malpractice Awareness Interview
- Disability & Chronic Illness Pen Pal Program
Community Discord
Support My Disability Mutual Aid Program, Chronic Crowdfund [which you can find on Twitter @ChronicCrwdfnd on twitter or you can email me at [email protected]you can also help by donating to the
Chronic Crowdfund GFM
Support Me And My Work
PAYPAL EMcClean696
CASHAPP ChronicCrowdfund
Wheelchair Van GoFundMe
Chronic Crowdfund GoFundMe
How to Support My Work
Buy somethingthing from my Chronic Crowdfund Amazon list
Donate to my personal GoFundMe or share the fundraiser
Buy something from my etsy
Subscribe to my YouTube like my videos, comment, and share the videos you find helpful
Support my mutual aid account on twitter- by donating, liking, commenting, and sharing
Donate to my own PayPal or cashapp so I can continue to make free content for others
Future Plans & Goals
Currently I am working on a children's book about disability awareness & acceptance, with a disabled illustrator, and disabled models for the illustrations to be based on. I also aspire to write articles about rare diseases, chronic pain, abelism, disability allyship, disability rights, and Healthcare disparities. Eventually I want to write a book with the goal of raising awareness of the prevalence of medical bias, medical ableism, Healthcare inequities/disparities, the prevalence of misdiagnosis & delayed diagnosis, and my experience with medical neglect/malpractice. I want to have a collection of stories of discrimination, denial of care, and medical neglect with no consequences (due to how reporting & investigating malpractice claims and reports filed against doctors) to illustrate how common medical neglect is & how hard it is to get justice. I am also working on starting a charity for patients with rare diseases. This charity will have 3 goals: decrease medical debt, increase accessibility, and improve Healthcare outcomes. I have plans to give accessible transportation to doctors appointments, have a mobility aid exchange program, and have a fund for accessible housing renovations. I also hope to expand my current small mutual aid page into a full blown mutual aid program where I can donate to people who need financial help. Another subject I am very passionate about is disability self advocacy, and I have been working on a course about self advocacy [mainly in the medical section of life] to teach chronically ill and disabled patients practical skills and tools to advocate for better Healthcare. It is an eight week course that has many relevant topics, which will be personalized to whoever is taking the course. I hope to teach at least one course in 2023. The link to sign up is above.
EDS, MCAS, Gastroparesis, and POTS clinic directory
EDS/HSD provider directoryMCAS/MCAD provider directorydysautonomia provider directoryPOTS provider directoryMotility Disorder provider directoryDysmotility Clinic directory
if you could tell the world one thing about EDS what would it be?
just because you can't see my pain doesn't mean it isn't real
you not hearing about a condition doesn't mean it doesn't exist
dont invalidate somebody pain just because you don't understand it
EDS is real whether or not you admit it. end of story
asking for basic accessibility isn't asking for too much. its not getting special treatment. its asking for equality
EDS doesn't just meant being flexible. it isn't only joint pain. its so much more. its way more complex. its easy injuries, waking up during surgery, dislocations with no trauma, gastroparesis, constant pain, and spine issues
the human body is so complex and can do so much. don't invalidate somebody because you are closed minded and can't accept somebody's rare condition
Having a rare disease isn't being a hypochondriacor munchausens. I understand that, in the UK, people who report that they think they may have EDS are, per some legislation, noted as potentially having Munchausen's.
being young and looking "fine" doesn't mean I'm not disabled or in pain
HSD isn't less severe than EDS, its still systemic (aka effects every part of the body) we just don't have the more rare traits. Just because you can't see our disability doesn't mean it isn't real. Sometimes people use mobility aids only part of the time, its normal and doesn't mean they're attention seeking.
at first you think pain is normal because there's no awareness for chronic illnesses. then eventually you learn that its not normal. sometimes I still can't believe I'm not normal and being pain free is a reality for most people
most of the doctors I see tell me I'm faking for drugs, EDS doesn't exist or is a trendy diagnosis that shouldn't be given out, or I'm "hysterical" (next time you're calm when you have multiple dislocations.... call me!)
being disabled is expensive and people also say you get everything for free while you pay out of pocket for life saving medication
Even if I talk about the party tricks or the fun soft skin or the bendiness that made me so good at gymnastics, that does not mean that awful things are not going on in the background that I can’t talk about. And that I’m not a china doll. Stop treating me like one.
Chronic Illness Resources
- CFS Self Help Courses & Worksheets
- The Zebra Yoga Club
- EDS Diagnosis Tips
- H-EDS Assessment
- V-EDS support groups
- EDS Online Support Group
- Local Support Group Directory
- Rare Disease Diagnosis Tips
- Do You Have ME/CFS? Quiz
- ME/CFS Symptom Checklist
- ASD Symptom Self Test
- Accessible Self Care [Word Doc]
- Accessibility In Your Home [word doc]
- ND Self Tests
- CFS or Fibromyalgia Quiz
- Chronic Pain & Fatigue Resources
- EDS Surgical Complications
- EDS & Surgery PDF
- Disability Self Advocacy Workshop
- Self Advocacy
- Preface to Self Advocacy
- Youth Transition Workbook [PDF]
- Disability Self Advocacy
- Adult ADHD Diagnosis: New Doctor
- Types of Splinting and Bracing for Hypermobility Syndromes
- Orthotic Intervention of Hypermobility
- Ehlers Danlos Braces
- EDS patient guide: Splints and Braces
- POTS assessing symptom load
- Signs of Subluxation
- AFO friendly footwear!
- Another adaptive footwear option
- open source wheelchairs
- EDS Diagnosis Flowchart
- EDS financial resources
- EDS/HSD school toolkit
- Lifestyle Reccomendations for POTS
- Finding a Gastroparesis Specialist
LINKS TO MY WORKSHOPS
- Living With EDS 1 [CC]
- Living With EDS [slide]
- Living With EDS 2 [CC]
- Living with EDS 2 [slide]
- Making Democracy Acessible [CC]
- Making Democracy Acessible [slide]
- Patient Self Advocacy [CC]
- Patient Self Advocacy [slide]
- Becoming A Disability Ally [CC]
- Becoming A Disability Ally [slide]
- Unlearning Internal Ableism [CC]
- Unlearning Internal Ableism [slide]
- Journal For Depression [cc]
- Journal For Depression [slide]
- Disabled Mental Health, Twitter Space Recording [CC]
My Reading List
| Title | Author | Subject |
|---|---|---|
| I'll Figure it Out | Marino Carlos | Abelism, illustrated book |
| Disability Visibility | Alice Wong | Disability Awareness |
| Disabled Futures | Milo Obourn | Radical disability inclusion |
| Radical History | Teresa Meade | Disability rights history |
| Care Work | Leah Piepzna-Samarasinha | Disability Justice |
| The War On Disabled People | Ellen Clifford | History, Disability justice |
| A Quick & Easy Guide to Sex & Disability | A. Andrews | LGBT inclusive Disability sex ed, illustrated book |
| Hypermobility Without Tears | Jeannie Di Bon | pain free exercise with eds |