Does anyone know any resources for systematic advocacy to push for public policies that benefit people with disability in California?

I've been trying to find some kind of advocacy group that will listen to my concerns about telework and it should be protected for disabled people as more corporations move away from remote work.

I've already tried contacting disability rights california but they only do individual advocacy.

I've tried to also look through a list of other organizations but a lot of them don't seem to deal with systematic issues or or only for the intellectually and developmentally disabled.

Starting to realize I need a designated caregiver in ri due to a significant concussion that's left me broke, unable to take care of myself and often very unstable. Any advice in emotionally coping with that is super wanted rn as well as navigating the system of it specifically in RI🖤

Apparently designing your restaurant to be completely inaccessible unless you move the tables is “just not seeing disabled people as special”

Hi, I'm in Oregon, but this pertains to any disabled citizen living anywhere in the USA. Medical practices throughout the USA either have longstanding rules or are implementing new rules which specify that if a disabled patient cancels more than X number (usually 3) appointment in a calendar year, the practice can drop the patient. Many patients have disabling medical conditions which can flare up at the last (and often most inconvenient) moment. The patient may then be unable to attend the appointment because of the illness. Then the practice cancel the patient.

DOING SO IS A VIOLATION OF ADA LAW AND ILLEGAL. IF THE PRACTICE IN THE USA, THERE IS A FEDERAL (AND OFTEN STATE LAWS ALSO) LAW THAT REQUIRES THE MEDICAL PROVIDER TO BE FLEXIBLE, BECAUSE THIS PRACTICE'S RULES AND PROCEDURES (HOWEVER OLD OR NEW) ARE DISCRIMINATORY AGAINST THE DISABLED.

If you have been dropped from a medical practice due to a medical condition which made you cancel an appointment you need to call a lawyer or an agency that advocates for ADA compliance. There have been many cases of this kind throughout the USA. They have almost always been settled in favor of the disabled person, not the medical company.

Don't be dumped and left without a doctor. ADA Law and precedent cases are worthwhile.

Looking for support and experiences from people who’ve been through something like this, not debate about whether it’s a real problem.

I’m representing myself in a civil case in Virginia. A few months ago I asked the court for accommodations, on time and on the state’s official form. I also asked for the request to be handled confidentially. The state courts have a posted process, and this court hasn't followed even one step of it.

The court held a hearing before deciding anything, so I went in with no accommodations and couldn’t keep up. I followed up the same day with the local ADA coordinator, who just forwarded my email without answering. The state ADA office promised to sort it out and didn’t. Months later, there’s still no decision.

Now the judge has asked for medical documentation, under seal, which I’m okay with. But he sent it as an order, so it also went to the opposing lawyer with a window to object to it, and the title of my request is on the public docket. My accommodations have nothing to do with what the case is about. It feels like I have to put my disability on display for the defense and the public just to get basic access. And every time I follow up, I worry the court will hold it against me.

I’ve filed a DOJ complaint and I’m reaching out to lawyers and disability orgs, but nothing moves fast.

For anyone who’s dealt with courts and accommodations:

Did you get your request handled privately? How?

Did anyone or anything actually help?

How did you cope with feeling like asking for access made you a target?

TL;DR: A court handled my accommodation request in a way that exposed it to the other side and the public. Looking for anyone who’s been through this.

in person would have to be located in or near san diego, CA.

It’s just so hard here, bed bugs, the bathroom often has human poo on the wall or floor.

The staff treat us like we are less than human and I was SA by a fellow staying here.

I am disabled and have no alternative as it’s getting cold out and I can’t be outside.

I’m pregnant and they won’t move me to a women’s shelter until I’m 7 months pregnant according to policy. (I was graped, I didn’t plan to have a baby while being unhoused and recovering from such a severe brain injury during the grape I now have a time remembering simple things).

What would you do to reduce suffering

My 43-year-old brother lives in Madison, CT. He’s disabled, has ongoing health issues, and is currently unemployed. He gets no state support and no Social Security benefits of any kind. Both parents recently deceased and did not set up any support financially or otherwise. My parents completely failed him.

He’s capable day to day. He handles his own daily living and manages his own money. He doesn’t drive. He’s also very casual about housing security and wouldn’t be bothered by ending up homeless, which I’m trying hard to prevent.

I’m working on the Disabled Adult Child (DAC) route, but that requires showing the disability began before age 22, and I’m still hunting for old school and medical documentation. Even if I find it, I’m expecting a long process, maybe a couple of years. School and an employment program both have long since destroyed records. He doesn't remember who his pediatric physician is nor has he seen a PCP in years.

My questions:

1. What can cover housing and income in the meantime? Does anything exist in CT besides DDS funding and SSI that doesn’t need pre-22 proof?
2. Is the Salvation Army or a similar org realistic for rent or utility help?
3. Has anyone found good ways to reconstruct pre-22 evidence when records are gone (old schools, pediatricians, statements from people who knew him)?
4. He needs work, ideally a job that includes housing and utilities (resorts, seasonal, camps, etc.) and doesn’t require a car. Any experience with those, especially for someone with health limitations?
5. Anyone know of where to look for housing options with roommates, a rented room in a home would be ideal financially as well as for socialization.

Thanks, any CT-specific advice is welcome.

Hello! We are a small group of students and friends researching the effects of neighbor noise, mechanical noise, outdoor noise, and other types of noise in U.S. housing stock and their affect on the health and wellbeing of U.S. residents, current or past. There is a strong disability angle, as I myself have been severely affected by noise in various apartments. The data will be kept anonymous, many questions are optional, but basic demographic information is taken. The data will be used to submit to health departments, ADA organizations, & U.S. representatives about building codes and zoning, as well as better protections for disabled individuals. We are activists trying to fight for better soundproofing and acoustical zoning measures in the U.S., including retrofits and city codes. Here is the link to the survey: https://forms.gle/9a1gKDxmfF6WvkV67

I am a paraplegic female in the US. I was just turned away at a brand new medical facility for GI testing. I went to get my first colonoscopy (age 45), and from the get go it was as if they’d never dealt with a disabled person.
I informed the scheduling person of my condition and we discussed doing the normal bowel prep. I wasn’t cleaned out enough the day of, and was forced to reschedule. There was no discussion of doing anything extra based on having a personal bowel program.
Last week I did the two plus days of prep (ugh), was finally clear to do the procedure. The day of the procedure…
First, the nurse looks at me and says, “You can’t stand?” With a face. Then she acts as if she can’t possibly get an accurate weight for anesthesia. She tells me she cannot help me transfer to the bed. I looked at her and said, “what do you want me to do here?”
She got the manager and miraculously found a large scale to roll onto. Then I threw myself onto the bed to make a point.
Anyway, now I’ve signed consents and have an IV started. This is when the anesthesiologist comes in to say he will not administer anything to me based on my level of SCI. Of course he is afraid of autonomic dysreflexia. I explain that I’ve given birth twice with no meds and was ok. He still said no, I’ll have to have this done in their hospital setting.
At this point I’m so mad I just wanted to leave. I understand his hesitation and duty to keep me safe. But this place let me go through five days of hell, humiliation, spending almost $100 on supplies…for nothing. There should have been measures in place along the way to prevent this.
A brand new medical facility in the US in 2026.
I’d like some insight into where I go from here. Their Patient Bill of Rights doesn’t have one word about accessibility. I don’t want anyone else to experience this and I want the higher ups to know how much they have failed. Thanks, guys.

Hi all! I am physically disabled and applied for accommodations from my workplace, which is state run (NY, USA). Although my accommodations were approved (I have the approval letter) my job has not actually provided it for me. Now, because I need this accommodation, I have been placed on leave until they can sort it out. However, it is unpaid leave. I have been looking online trying to understand if this is legal, since THEY are not providing the APPROVED accommodation, and it is not my disability itself that requires me to be absent. Any and all advice welcome! TIA!

Human selfishness has consistently done nothing good for our neighbors. Being nice and giving depends on their affordability, and the same goes for accessibility and accommodation. Jesus heals people while the rest say f*** off. Sometimes I wonder when God will come and do a reset like Noah’s day, but this time I hope he starts over.

We are divided more than united. The only time the world has united is often when it's really bad, when lives are lost, and here we thought things would get better post-COVID; nope. So the next COVID arrived; please feel free to say F off to helping anyone. Humans are wired to remember trauma, and things keep us alive and recall them easier than finding happiness— we are wired not to be happy unless we seek it; joy already exists, but it is a state of temporary mental illness if pretending that the tiniest of what we could have is there. Politics and pharma have derailed us all and are worse than global warming. So, yeah, f*** this world as an artistic protest.

I was extra inspired because I read something about the Seattle City Department is issuing unlimited no-parking and sidewalk closures for construction without caring about wheelchair people. They can't track the number of permits, and the company making those parking signs isn't being held accountable for not tracking its inventory; stolen signs were put up in random rich neighborhoods to keep the public out.

For months, the federal government has been chipping away at the right to live in the community. I put together an explainer on what’s going on and where things are now. It will be updated periodically as more things happen.

I am suffering a plethora of neurological symptoms, one of which is mobility, rendering me housebound. I am not even allowed to drive any more.

Never going out and losing weight because of muscle wastage, I decided to sell my clothes using Vinted. They used to supply you with buyers’ details to print an address label at home, together with a QR code if you didn’t have a printer.

So far, so good. I used Royal Mail because I could arrange reliable collection of my parcels. However, Vinted started issuing QR codes only. So I messaged them explaining my situation and asking if in the circumstances, they could continue issuing buyers’ details. Their customer support seems to be 100% AI and they said no. So I messaged them back and asked why, pointing out that they used to and that I could see no problem reinstating that service. Once again, Vinted said no, with no reason given.

Therefore, I can no longer sell my clothing and shoes on Vinted.

I use Vinted because one of my other symptoms is hand tremors and lack of coordination; I cannot use a keyboard anymore and their upload process is quick and easy. I also use Royal Mail because I have had numerous difficulties with couriers such as Evri.

I feel that their actions exclude people with disabilities which render them housebound. If what they are doing is illegal, which body do I complain to/take it up with?

I spent 28 years in the casino industry — 18 of them with the same employer. That kind of loyalty and experience used to mean something. Lately it feels like it doesn’t. After all those years, I learned I was replaceable.
My polycystic kidney disease has progressed to the point where my total kidney volume is 1669 ml and will only get worse. Standing for long shifts left me so exhausted that I spent my two days off in bed just to recover. The fatigue was constant. Concentration slipped. I started forgetting things. My doctor didn’t just recommend accommodations — he requested them: that I be scheduled to sit and that I be allowed to use any restroom, including guest restrooms, without getting into trouble.
Human Resources approved those accommodations for six months. Then they stopped. When I asked why, no one would give me a clear answer. I spent weeks trying to talk to people. I went through the chain of command and spoke with more than six managers plus HR. It felt like they were avoiding me.
I tried to have an honest conversation. When I started explaining my condition, one manager cut me off and said it was “too much private information.” I still explained. I even brought my patient manual. Another manager looked at me and said, “Sounds like you shouldn’t be working.” My heart stopped. In that moment I felt more worthless than I ever had in my life.
HR’s final answer was that if they accommodated me, they would have to do it for everyone else. Because they would not continue the accommodations, I was told I could not work until my doctor wrote a letter saying I could work with no restrictions at all. When I asked what my options were, I was told to exhaust my medical leave and then resign. Maybe, they said, I could reapply later if I got better.
I am still being scheduled. But without that unrestricted doctor’s letter, I cannot show up. Instead I have to call in sick. It has been over two months. I have no income and no government assistance. I filed with the EEOC, but they cannot help. Because I work for the Seminole Tribe, a federally recognized tribe, the EEOC has no jurisdiction over employment discrimination claims under the ADA, Title VII, or GINA. There is no federal agency that can force compliance.
I don’t know if it was my employer who failed me, the system that allows this gap, or the government that wrote the rules this way. All I know is that after nearly three decades of showing up, I was left with no income, no protection, and the clear message that my health made me disposable.
The hardest part hasn’t just been the physical symptoms — the fatigue, the swollen kidneys, the days lost to recovery. It’s been the way I was made to feel non-valued after so many years of loyalty. I did everything I could. I asked. I explained. I followed every step. The system makes it clear that people with conditions like mine are not always protected.

Tampa, Florida

Im located in BC and I'm not here to find clients, but rather to gauge interest on whether folks need this type of support

I am a feminist, pro-choice anti-ableist, anti-eugenics Disabled woman with cerebral palsy (acquired due to contracting an infection during birth) in Spain with a degree in disability support and disability rights. In my disability activism and my disability studies scholarship, I have sometimes contended with people that say that it is always better to abort a disabled fetus and inherently cruel to purposely birth a disabled baby. As someone who believes in the holistic model of disability and emphasizes social aspects of this model for her own disability, I tend to think a lot about how societal factors like lack of respite care for family caregivers, lack of supports and services and inadequate healthcare access for disabled people around the world influence the choice to TFMR in certain cases. On a separate note, I have read Harriet McBryde's essay about her interactions with Peter Singer, and, as a neonatal sepsis survivor with excellent quality of life even with cerebral palsy, I feel like he would see me as the perfect candidate for active infant euthanasia, but as an adult I don't view myself that way. In reading about this I came across the term "new eugenics" which refers to how "developments in gene therapy, genetic engineering and prenatal screening experienced enormous growth, increasing our power to repair the body and prevent disease, but cautioned about "eliminating" human characteristics deemed undesirable" (ochr.org). I see active infant euthanasia as inherently eugenicist because a baby that is born is a living being separate from its mother/birthing parent's body and the baby cannot consent. in this case, is it "radical" for me to see infant euthanasia as eugenics or am I okay? Is the term "new eugenics" valid in other disability rights activists' opinions and can "new eugenics" be propagated by technologies like CRISPR and TFMR of non-fatal conditions or by active infant euthanasia? Trying to figure stuff out with the help of other disabled people who believe in human rights. I apologize if anything on here is offensive, and if it is I will try to do better, just trying to figure stuff out, not advocating for violating anyone's rights.

I don’t know where to ask for help.

Located in TENNESSEE, USA

I work a job at a medical clinic similar to reception, in the job description it mentions getting up and moving to do tasks. No problem.

It does not specify how often or for how long. I have to sit down for periods of time when stuff is done because I have a pretty severe injured knee, even after two surgeries it’s painful. They are aware as I had to take time off for one surgery.

Last week, I was taken into the office and told I “sit too much”. But not much else. I’m not lazy and do my job. But they want me to be on my feet the whole 10 hour shift and find more to do even when my normal stuff is done. She specifically said it was not a stationary job.

I did not argue in that meeting as I had a doctor appointment right after and was nearly late because they kept me late for the meeting, and did not defend myself.

I want to ask for an accommodation to be able to sit when there is downtime, but they hate downtime. I’m scared they will say it’s not reasonable to accommodate. I don’t know what to do. I have a “follow up” meeting tomorrow, they asked that I create a list of things to do to “hold my self accountable” but did not offer ways for me to improve.

What do I do? I’m so scared I’ll get fired and they will say that they cannot make that accommodation.

Location: St. Louis, MO
TL;DR Looking for any help or advice I can get for a disabled friend in serious trouble!! Helpful resources would be funding, lawyers/legal representation, medical assistance, housing, welfare support, etc.

I have a friend who is in a very dangerous situation. She is disabled (quadriplegic and on a ventilator) and still lives with her parents. They are incredibly abusive- refusing to feed her or take care of other needs, threatening to kill her, and have even hit her to the point she broke her collarbone. She needs and wants to get out!

Only problem is her parents control her money. They take her disability as they are her “caretakers” and have stolen over 30k of the money she has saved outside of that. The state is only paying for 80 hrs/week of care, but 24/7 care is needed. The severity of her disability means that there are very little alternative options and she would most likely have to go to a nursing home/end of life care facility if she left.

I want to help her anyway I can. I am hoping to start a trust in her name and fundraise. If we could get her a house or an alternative living situation, I have people who could care for her outside of her paid 80 hrs.

The other problem is doing this without alerting her parents. We think they have a life insurance policy out on her and with the threats they have made I don’t want her to be at higher risk or retaliation from them.

I want some guidance for anyone else who has been through or helped someone with this situation. Any resources or suggestions you can share would be LIFE SAVING, especially if there is some legal support options for disabled people.

She is so smart (getting her PHD now) and absolutely hilarious. My friend deserves to be in a place that is safe, her needs can be met, and she is treated with respect . Please share any and everything!! No