Our Disabled Bill of Rights
Introduction
We the Disabled People of the United States, in order to establish Justice for All, and to insure and promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do put forth this Bill of Rights for Disabled People.
In order to secure the status of equal citizenship Disabled People must have equal access to Civil Rights. “Civil rights are the basic legal rights a person must possess in order to have such a status. They are the rights that constitute free and equal citizenship and include personal, political, and economic rights. No contemporary thinker of significance holds that such rights can be legitimately denied to a person on the basis of race, color, sex, religion, national origin, or disability.” (Source)
ALL people are created equal. Disabled People are endowed with the same Unalienable Rights as all people are endowed, among these rights are Life, Liberty, and the pursuit of Happiness.
Furthermore, Disabled People are endowed with the most basic of human rights - the rights to food, shelter, medical care, and employment when able.
As Pearl Buck once wrote, “the test of a civilization is the way that it cares for its helpless members.” Disability is a natural part of human existence; we have always existed and we will always exist.
It is the duty of any government to protect and care for those who are disabled, as it is to protect all it's people, particularly those who are at risk.
Disabled people deserve equal rights and opportunities. Governments must create and enforce Laws that are necessary for the protection of disabled people. Governments must guarantee the Basic Needs of disabled people by law.
Our Rights Right Now
Disabled people deserve to participate in our society. In order to be full members of society, the right of disabled people to community access, to the limits of the person’s ability, must be guaranteed by law. In order to ensure that the laws are followed the government must educate the public not only about the rights of disabled people, but also how to interact with and accommodate disabled people.
Physical Accessibility
Disabled people must have access to ramps, handrails, and all other equipment needed for safe access to their community. Disabled people must have access to ALL buildings open to the public, including commercial and government buildings. Governments must ensure that building codes require accessible accommodations. Accessible accommodations should include: Elevators, Escalators, Wheelchair Ramps, Accessible Seating, Accessible Bathrooms, Handrails, Enough Space to Freely and Easily Maneuver a Wheelchair, and all other accessibility needs.
Transportation
Disabled people require guaranteed access to transportation in order to have free access to their community.
Governments must guarantee wheelchair users the right to remain in their own wheelchair when traveling. All buses must have wheelchair anchors for safety. Planes must have anchors for wheelchairs like buses.
Currently, airlines routinely destroy and damage wheelchairs (on average 28 wheelchairs a day are damaged by airlines). Because wheelchairs are highly customized, they are extremely important, expensive, hard to replace, and it takes a long time to fix or replace them. It also means that when a person is without their customized wheelchair, they will most likely suffer physical harm if they need to use a different chair that is not customized for their needs. People have died due to the damage caused by replacement chairs.
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Source 1: Hand in Hand grieves the loss of Engracia Figueroa
Source 2: US Airlines Damage Thousands of Wheelchairs a Year
Source 3: Information from the US’s largest wheelchair manufacturer about why they take so long
Also sourced by our own personal experience
Marrying Non-Disabled People
Disabled people deserve Marriage Equality. In order to ensure marriage equality, disabled people who are married must have access to all benefits and protections regardless of their spouse's assets or income. Without this protection disabled people can be forced to be reliant on their spouse for support. When this happens, it denies disabled people independence and the ability to leave abusive relationships and makes us vulnerable to abuse.
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Source 1: SSI’s consumer Q&A about getting married
Source 2: Research, Treatment of Married Couples in the SSI Program
Access to Participate in Goverment
Disabled people require guaranteed access to government agencies. All government agencies must be required by law to be accessible both physically and in their policies, practices, and systems.
To ensure disabled people have equal access the government must enact policies, practices, and systems in government agencies that are designed to serve and protect disabled people as much as possible rather than focusing on limiting the abuse of a few at the expense of many.
Disabled people deserve to participate in the government. It is especially important that disabled people have leadership roles in any agency that serves disabled people. The right of disabled people to vote must also be protected and ensured by law.
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Source 1: as of November 2020, the Colorado state Capitol building is “official accessible”, “it isn’t possible to get around all areas of the building in a wheelchair.
Sourced also by our own personal experiences, that a lot of “officially accessible” buildings are not actually accessible. For example, a building can be “officially accessible” because it has wide doors and halls and an elevator, but if the elevator only works 70% of the time, there are no grab bars in the bathrooms, the carpet is too thick to move in with wheels, and the doors are too heavy to open while also getting a wheelchair through, the building is not actually accessible.
Access to Basic Human Needs
Disabled people deserve a reasonable quality of life, including a living income. As soon as someone is diagnosed as disabled, the government should ensure that their basic needs are met to the level of their need. SSI/SSDI benefits range from $794 to $1,700 a month (most people receive $1,400 or less). All of which are below the poverty line in most places in the United States and does not allow us to afford housing, medical, food, and other necessities. This leaves us reliant on other “low-income” programs which are not adequately prepared to accommodate our disability needs, even though they are our only option.
Because disabled people have difficulty accessing services, any kind of gatekeeping results in discrimination against disabled people. The current systems put into place to “serve” disabled people are gatekept to the point of inaccessibility in almost all cases.
Disabled people require guaranteed access to Housing. The government must ensure that there is adequate accessible and affordable housing everywhere. In order to address an alarming deficit in affordable accessible housing, affordable housing must be required to be accessible. The way the current system works, we end up shoved into nursing homes or being trapped in non accessible low income apartments. There is affordable housing in rural areas, but then we don’t have access to the medical care we need to keep up with SSDI/SSI reviews.
One of the most basic human needs is the need for food. For disabled people, this can be particularly challenging for a variety of reasons. Governments must guarantee that disabled people can afford the cost of groceries and essentials like toilet paper, and paper towels; specifically, an automatic approval and minimum amount of food benefits each month when approved for disability, with added funds to cover increased costs of special dietary needs due to disability or other health issues.
Disabled people need access to health care. Medicare approval happens automatically two years after the SSDI “disability” date, Medicaid will only cover you if you have less than $2,000 in assets (in most states), and during that period disabled people often also have no income, if you make any money during this period you can risk your ability to qualify for disability income and the Aid to the Needy and Disabled only pays $200 a month. We are forced to spend any savings we have to qualify for medical coverage and then wait an indefinite amount of time for our Disability income approval. This guarantees that we can not afford medical needs that aren’t covered by medicaid. This combination of requirements also puts us at extreme risk of death, illness and abuse.
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Source 1: Medicaid Eligibility
Source 2: Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50-State Survey
Source 3: SSI Benefit Amounts
Source 4: SSDI Amounts
Source also, our own personal experiences.
The Government’s Failure to Protect our Life, Liberty and Pursuit of Happiness
The history of the United States is a history of repeated injuries and discrimination against disabled people. This continues in numerous ways to this day.
The government has refused to create and pass Laws that are necessary for the protection of disabled people.
The government has failed to ensure that the right of disabled people to Life, Liberty and the pursuit of Happiness is protected.
The government has created a system for Disability Benefits that discriminates against disabled people and actively harms disabled people; this can and does kill disabled people.
The government, by its own example, and its failure to educate the public about disability rights, encourages discrimination against disabled people.
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Source 1: Almost 110,000 people died while waiting for an SSD hearing
Source 2: Abuse and exploitation of people with developmental disabilities
Source 3: Highlighting Disability / Poverty Connection, NCD Urges Congress to Alter Federal Policies that Disadvantage People with Disabilities
Also source: our own personal experiences
What We Need
In order to prevent the abuse of disabled people and to protect the rights of disabled people, that the government must:
Require that all government agencies. including their systems and policies, to be accessible.
Serve the Greatest Good - Require government agencies that serve disabled people to be accessible, and create policies and systems designed to serve and protect disabled people as much as possible rather than focusing on limiting the abuse of a few at the expense of many.
Timely and Reliable Payment of Benefits - Pay SSDI/SSI, SNAP, and other benefits on the same day every month (not, for example, the “third Thursday” of the month) and for a consistent amount with a minimum of 90 days prior warning before they change.
Reasonable Accommodation - Require automatic approval of reasonable accommodations by all government agencies and companies that receive government funds or tax breaks.
Currently, the process has been turned into a “prove you’re not lying” process and is excessively burdensome.
Create a Committee for Disability Rights that reviews and approves of rules and regulations regarding disabled people
The government should require all members of the Committee for Disability Rights be disabled themselves.
The Committee for Disability Rights should be given the power and authority to protect the rights of disabled people and ensure accessibility
Make it illegal for government agencies, including social security, to refuse people due to “fraudulent” behavior without significant cause and proof.
This is necessary because the current disability process discriminates against disabled people by being inaccessible in the following ways:
Undue Financial Burden - Most people fighting to be approved for disability have to spend thousands of dollars they don’t have in appeals, hiring a lawyer for said appeals, and collecting medical records which more often than not cost a decent amount of money. Most doctors also charge a fee to even fill out disability paperwork for you, and re-charge that fee each time you re-apply for disability.
Burden of Proof - The current system is inaccessible because the burden of proof rests on the disabled person. The burden of proof should be on the government to prove fraud. When a licensed healthcare professional diagnoses someone as disabled that should automatically start disability payments. When the system requires a lot of energy and effort (such as long delays, lots of red tape, documentation, and paperwork) it is inaccessible to those who need it most.
Forced Poverty - Under the current system, disabled people who need medicaid in-home services, or SSI are not allowed to have over $2,000 in assets and savings. The limits on savings and assets should be removed. Disabled people need to be able to save up for normal expenses such as security deposits for apartments, car repairs, buying a car or a home, etc.
At the very least, asset caps need to be increased to something that would cover the most expensive needed mobility equipment that Medicaid/Medicare doesn’t cover (or routinely denies) such as a custom electric chair (approximately $20k), wheelchair van (approximately $40k), or a down payment on an accessible house.
Also under the current system you have to have basically zero income and assets just to apply, and then the approval process takes years. It forces you into a situation where you are ripe to be abused.
Harms Disabled People - Approximately 10,000 people a year die while waiting for their Social Security Disability Insurance claim approval. The remainder who live are forced to live on very low, to zero income (for example, Aid to the Needy and Disabled in Colorado is $200 a month.) Leaving people who are already physically vulnerable with no resources for an indefinite period of time exposes them to neglect and abuse in alarming numbers. Disabled people are 2.5-3 times more likely to be victims of violence than their non disabled counterparts, and this doesn’t even count the violence in the institutions we are forced into when we can’t afford to pay for housing.
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Source 1: The long wait: Americans stuck waiting months for disability
Source 2: The unacknowledged crisis of violence against disabled people
Burdening Permanently Disabled People With Unnecessary Reviews - Again, the burden of proof should be on the government to prove fraud. Permanently disabled people should have the right to choose to live the rest of their life in peace without further medical intervention. For obvious reasons when SSDI/Medicare/Medicaid provides the resources a disabled person needs to improve their life, that improvement should not be shown as “proof” they weren’t disabled, and result in those resources being taken away.
SSDI/SSI should never deny on re-evaluation because of improvement caused by access to resources.
SSDI/SSI should never deny on re-evaluation based on a person’s inability to access medical care, or choice to die in peace without medical intervention.
SSDI/SSI should never deny on re-evaluation because of short periods of outward improvement. Many disabilities are “dynamic” and we deserve the right to try to do what we can without losing our access to our basic human needs.
SSI/SSDI processes should never take more than three months, and should definitely not be taking years.
SSI/SSDI claim processors, judges and doctors who have a lot of claims that they initially denied come back as approved after years of appeals should be retrained or fired.
SSI/SSDI employees of any rank should be required to have regular training on disability, chronic illness, discrimination, and other topics pertinent to their job.
SSI/SSDI employees should include a large percentage of disabled people.
Make it illegal to garnish Social Security Disability Income for student loans and give SSDI all the protections of Social Security Income.
Guarantee the right of disabled people to a reasonable quality of life.
The government should, at a minimum, Guarantee the Basic Needs of disabled people by law:
Marriage Equality - Stop taking benefits away from disabled people who are married regardless of their spouse's assets or income. The current system forces disabled people to be reliant on their spouse for support, which denies disabled people independence and the ability to leave abusive relationships.
Housing - Currently, there is such a lack of accessible housing that wait times can be over 10 years. (Note: We could find no actual resource on this because there is no research, but our personal experiences show this to be true.)
Start building affordable accessible housing everywhere.
Require all new affordable housing be accessible.
Start giving grants to companies providing low income housing to make their current housing accessible.
Provide training to housing authorities and other low income housing providers on accessibility, reasonable accommodation and the ADA.
Cost of groceries and essentials like toilet paper and paper towels; specifically, an automatic approval and minimum amount of SNAP benefits each month when approved for disability, with added funds to cover increased costs of special dietary needs due to disability or other health issues. Currently most people with disabilities get approximately $20 a month (when not taking into account the COVID boost amount). This is not enough to pay for food, let alone special food items needed because of our disabilities. Also, the amount changes all the time so we can’t budget or plan.
One of our founders has had to send over 30 faxes/emails in the last 4 years to keep her food stamp benefit, because of a computer glitch, and no one at the government office will fix it. This is inaccessible.
Make SNAP benefits a set amount, enough to accommodate our increased need because of health issues, fill our card on the same day every month, and don’t make us submit a burdensome amount of paperwork to qualify and/or maintain these benefits. Give us adequate notice to access other resources if the amount is going to decrease.
Cost of childcare and essentials for children (formula, clothes, school supplies, glasses, medical care, prescriptions, special accomodations for school, therapy) if the disabled person(s) has children or is pregnant need to be considered in payment amounts of food, housing, and disability payments.
Emergency funds should be easily available for disabled people to access at any time for any sudden needed expense, like wheelchair van repairs, heating/ air conditioning repair, broken medical equipment, disaster recovery, or weather damage/destruction. We are forced into abject poverty, we have no way to protect ourselves against these things.
Access to medical equipment, doctors, specialists, and therapy/psychiatric visits; prescriptions, hospital stays, in-home care, medication and any other medical costs a disabled person may need when navigating the ever-changing road that is chronic illness.
A regular reason for disabled people to be denied mobility equipment (or features on that equipment) is that the disabled person “doesn't need to leave their home.” In this way disabled people are essentially being subjected to unlawful imprisonment in our own homes for no crime.
Medical equipment suppliers that contract with medicaid and medicare should have some contractual obligations (for repair or replacement of defective or broken equipment) after delivery of the equipment for at least the period of time Medicaid/Medicare will not cover replacement equipment. The burden of arguing who should cover this should not fall on someone who is progressively ill. It should be already worked out.
Remove unnecessary administrative barriers caused by insurance approvals when someone is chronically or progressively ill. There should be a way they can flag your file, and either push through automatic approval or assign someone to review your account before they make you make all those phone calls every time. If they are going to approve it in the end, why put the burden on the sick person to fight for it when everyone else involved already has your entire medical record?
Insurance companies should not be making decisions about which medications we are taking. They should not be making us fight for the medications that we do need. The rate of medication denial needs to be reviewed. One of our founding members has had meds denied that were $20 a month and had no street sale value or any other kind of rational reason to be denied. About 80% of her new meds since starting medicare have been denied (it is a monthly thing) and have to be repealed. She is dual covered by medicare and medicaid and still pays for three of her medications out of pocket. These are medications that keep her out of the hospital, it is in the best interest of everyone to keep her out of the hospital, medicare should definitely be covering those meds.
Telehealth visits should always be a covered service for any insurance (including medicaid and medicare) for any health visit in any location. A lot of us can not leave the house, so the introduction of telehealth for COVID was life changing as far as access to health care.
Physical therapy should be easily approved for long-term therapy if it is beneficial for pain, strength and well-being. Right now it can only be approved in 4-6 week spurts, but for many people with disability and chronic illness, long-term physical therapy, including myofacial release, manual lymphatic drainage, help with stretching and strength maintenance are ongoing issues and need long-term approval.
Doctors need to be trained about chronic illness and chronic pain (preferably by disabled people). Right now access to competent medical care is so limited because a huge percentage of doctors have no knowledge of disability except inaccurate cultural stereotypes.
Access to Pain Management
Legalize Marijuana nationally and remove laws about use of marijuana in low income housing.
Many of us live in legal states, do not have access to opioids because of the 2016 CDC guidelines, and have been advised by our doctors to use medical marijuana, but we can’t because it is illegal in our federally funded low-income housing. Even if we are just using a topical ointment it is illegal. (We understand there would still be rules about smoking it in buildings, but we should be able to own it if it is medically prescribed.)
Repudiate and force withdrawal of the 2016 CDC Guidelines on Prescriptions of Opioids
States need to remove the backlash state level laws that occurred as a result.
Doctors who have been targeted as a result of these guidelines and laws need to be exonerated and reinstated.
Pain patients need their therapeutic doses restored (or initiated if they’ve become disabled since 2016.)
Particular attention should be paid to veterans as they have been disproportionately affected negatively by these laws.
Reliance on pain medication is absolutely not the same as addiction.
There are volumes of data that show that the suffering and death that these laws have caused did not have the intended effect of decreasing drug overdoses. In fact overdoses have increased substantially.
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Source 1: Debunking Lies resource list by The Doctor Patient Forum
Source 2: CDC Opioid Restrictions Resource List by EDS Info
Please note that these are both source lists put out by well respected pain advocacy groups.
Access to basic essentials like clothes, deodorant, body wash, lotion, shampoo, toothbrushes, mouthwash and toothpaste, menstrual supplies and any items not listed but deemed essential to the health and well-being of the disabled person need to be reasonably covered by the benefits we receive.
Access to service animals when needed. Right now service animals are very expensive and difficult to access.
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Source 1: Service Dog Registry Buying Guide
Access to Housing
Even at higher than average amounts, SSDI doesn’t qualify someone for Habitat for Humanity because the income level is too low.
Affordable accessible housing (especially affordable on SSDI and in the range of doctors and specialists that disabled people need access to, to keep their SSDI) is so limited there are 5-7 year wait lists.
Even “accessible” housing is not actually accessible because there is such a huge lack of education and understanding on disability rights, reasonable accommodation, and the ADA. (Further explained later)
Create an Accessibility Fund for business to improve accessibility and meet new accessible building codes.
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Source: Mostly this is our own personal experience.
Source 1: Habitat for Humanity Income limits
Access to effective mental health care.
Guarantee the right of disabled people to access the community up to the limits of the person’s ability.
Guarantee access to ramps and other equipment needed for safe access to the community.
Guarantee access to all buildings open to the public
Require commercial and government building codes to be accessible. These accommodations should include:
Elevators
Escalators
Wheelchair ramps
Accessible seating
Accessible bathrooms
Handrails
Push button or easy open doors
Require all public and low income housing be accessible
Require all building codes be approved by the Committee for Disability Rights
Guarantee access to transportation
Guarantee wheelchair users the right to remain in their own wheelchair when traveling by plane - planes should have anchors for the chairs like buses do. Currently, airlines routinely destroy and damage wheelchairs. Because wheelchairs are highly customized, they are extremely important, hard to replace, very expensive, and it takes a long time to fix or replace them. It also means that when a person is without their customized wheelchair, they will most likely suffer physical harm if they need to use a different chair that is not customized for their needs. (Sources listed above.)
Non Emergency Medical Transport Programs are notoriously bad. They will leave you places, yell at you, never show up, and still somehow charge for taking you places. Identify what the problem is with these and fix it. One of our founders had to take a ride home with a stranger from a doctor’s appointment once because the NEMT driver never showed up. At other times was left sick and suffering for hours in summer heat or winter cold. Because it was her only way to get to doctor appointments she had to deal with it, but if the government is paying for it, it shouldn’t be like that.
Reform SSI/SSDI with active input of disabled people who currently receive it (especially people who were denied for years before they were finally approved and backdated.)
Once someone has been diagnosed as disabled by their doctor they automatically get approved for SSDI unless they choose to opt out or there is substantial evidence of fraud.
Ensure equal access to disability benefits for BIPOC.
Remove penalties that occur when a disabled person on benefits marries an able bodied person with “normal” assets and income, and the penalty that occurs when two people on benefits marry each other. (sources above)
Remove penalties for assistance from friends/family/nonprofits that disabled people need in order to survive.
Include disabled people in the process going forward in perpetuity by law. Including decision-makers, review doctors, policy makers, judges, and admin. Stop making decisions for us without involving us.
Legislate automatic increases in SSDI and SSI to keep it at a Living Wage
Reform SNAP
Once someone has been diagnosed as disabled by their doctor they automatically get approved for SNAP unless they choose to opt out.
Once someone has been diagnosed with a disease, allergy, or condition that means that they will have to buy special foods or have a special diet by their doctor they automatically get approved for Special SNAP benefits to cover the added costs unless they choose to opt out
Increase benefits for those in major cities and for people who live in “food deserts” to cover increased costs
Include disabled people and people who have had SNAP benefits in the process at every level going forward in perpetuity by law.
Pay SNAP benefits on the same day every month and if the amount is going to decrease, notify people at least 90 days in advance.
Legislate automatic increases in SNAP benefits to keep up with the cost of living
Reform Social Services
Assign a social worker to each disabled person automatically as soon as a doctor diagnoses them.
Raise the wages of social workers and reduce their caseload
Social workers should interface with the government agencies for us and complete the paperwork we need to do, especially in cases where the paperwork is overly burdensome (and therefore inaccessible) such as for SSI/SSDI, public housing, SNAP, Medicaid Waiver services, and other bureaucracy heavy benefits.
Have the social worker who is assigned to each disabled person make sure they get all of the services they need.
The goal of social work for disabled people should be to relieve suffering as much as possible and remove barriers and burdens.
Increase the budget for Social Services to a level that ensures that all of these needs are easily met.
Reform the healthcare system in the following ways:
Require Medical Schools to have classes taught by disabled people that are an entire semester of class about disability and medicine
Require Medical Schools to offer accessible options for people to receive PhDs. The hazing/ableist nature of residency needs to be dismantled and made accessible for people with emotional and physical disabilities.
Create an independent organization charged with investigating healthcare providers who have been reported for abuse.
Require an in depth investigation of any healthcare provider that has 3 or more reported incidents
Empower the organization to levy fines, level criminal charges, revoke medical licenses, and/or ban them from working in any position where they have power over disabled people.
Allow for anonymous, low-impact reporting that is accessible to disabled people without risking our own medical care or livelihood.
Require training for all healthcare professionals regarding communicating with neurodivergent people, different ways pain presents, racism in medicine, other biases in medicine, chronic illnesses and other long-term diseases, and other areas that affect people with disabilities.
Level heavy fines for violations of the Americans with Disabilities Act and all other disability rights.
The Americans with Disabilities Act does not currently adequately protect disabled people.
For example;
The ADA makes it illegal for decor to be placed on guardrails or staircase railings because it blocks access by disabled people, yet you can see it everywhere including government buildings and medical buildings. (Source is our own experience.)
The ADA makes reasonable accommodations around policies and procedures apply to public housing agencies but none of them seem to be following the law, or even know how to, even though for a lot of disabled people the housing agencies are our only access to accessible housing. (Source is our own experience.)
Avenues for Reporting - create avenues for reporting harm without putting disabled people's benefits, housing, medical care, and safety at risk, such as an anonymous reporting system. “Suing them” is not accessible for many who are limited on time and energy due to their disability.
Right now all of our options for reporting abuse, violations of the ADA, or other discrimination are not accessible because they either risk our access to basic human needs, or require an undue amount of paperwork (such as bringing legal action).
Fund a public education campaign focused on educating the public about disability, disability rights and accessibility. The burden of educating the public (especially healthcare providers, government workers, and anyone who provides services for disabled people) should not fall on disabled people who have limited energy and capacity.
Currently, the public has very little awareness of the Americans with Disabilities Act and the rights of disabled people. Most people who aren’t disabled think the disability problem is “fixed” which only further shows the lack of awareness.
Very few people understand the reasonable accommodation process as it was intended to be used; they see it more as a fraud prevention process where they have the right to all the private medical information they desire in order to “prove” the disabled person doesn’t really “need” the accommodation. It should be more of a good faith negotiation where everyone wins, but it ends up being this heavily burdensome process on the disabled person, where their needs are seen as optional, and the company is seen as an investigator.
Most disabled people face accessibility problems and/or violations of the ADA every time they leave their homes (and a lot of us inside our homes also). This causes an undue burden on disabled people because there is no easy anonymous reporting process that is accessible to us.
Make it illegal for employers and schools to penalize people for “sick time” even with large amounts of doctor “proof”. Chronically ill people don’t have the luxury of being dependable, it doesn’t mean we’re not valuable or we don’t deserve education or access to work.