My attitude: If I don’t get what I need, I may die, so what do I have to lose by trying? We are discriminated against by bigots who don’t want to understand what the Americans with Disabilities Act needs we have are. People hear ADA and think “expensive.” This has been proven to be mostly false as most changes actually involve no money. The online resource from ADA Hospitality, Accessible Meetings, Events & Conferences Guide http://www.adahospitality.org/accessible-meetings-events-conferences-guide, covers MCS.

U.S. Department of Education

Multiple Chemical Sensitivity Policy and Resources (2001)
“MCS Is Now Recognized as a Disability. Both the US Department of Housing and Urban Development (HUD) and the Social Security Administration (SSA) have recognized MCS as a disabling condition. People with MCS have won several Workers Compensation cases. A recent human rights lawsuit in Pennsylvania established the right of an affected person to safe living space in subsidized housing. Both the Maryland State Legislature and New Jersey State Department of Health have commissioned studies of MCS. The NJ study provides an excellent overview of medical and legal issues related to MCS.”

U.S. Department of Health and Human Services, Centers For Disease Control and Prevention

Indoor Environmental Quality Policy (2010)
Unfortunately this link is dead.
“Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines.” (page 9)

The United States Access Board Policy to Promote Fragrance-Free Environments

“There is a growing number of people who suffer more severe reactions to these and many other types of products and chemicals. This condition is known as multiple chemical sensitivities (MCS) and involves people who have developed an acute sensitivity to various chemicals in the environment. People with MCS experience a range of debilitating physical reactions, some even life-threatening, to chemicals used in a variety of products, including fragrances and personal care products, deodorizers and cleaners, pesticides, wall and floor coverings, and building materials. It’s a complex issue with a variety of triggering agents and physical reactions. Different people are affected by different products in different ways. The common factor is that the reaction, whatever the type, is very strong and disabling. Information needs to be developed on exactly what brings about such an acute sensitivity to certain chemicals, how and why this happens, and what can be done about it.”

HUD Policy Statements on Multiple Chemical Sensitivities as a Disability

From the excellent film Chemical Sensitivity A documentary produced/directed by Alison Johnson. HUD has published many papers about meeting the needs of those with MCS. See the Resources section under “Housing.”

“Hello, everybody. My name is Bennie Howard. I am the Acting Director of the Office of Disability Policy at the U.S. Department of Housing and Urban Development. This video that you are about to see is designed to raise public awareness about how multiple chemical sensitivity affects the lives of thousands of Americans every day.

“Federal laws–specifically the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act–prohibit discrimination on the basis of disability. HUD considers multiple chemical sensitivity to be a disability under these laws. Despite this coverage, the Department continues to receive many telephone calls and correspondences from people with multiple chemical sensitivity who report that their landlords refuse to reasonably accommodate their disability. If you, or anyone you know, believes that they have suffered housing discrimination because of their disability, please contact the HUD office nearest you. Fair Housing is not an option. It’s the law.”

MCS Disorder and Environmental Illness as Handicaps (1992)

“The General Counsel has accepted the attached memorandums the Department’s position on the issue of when Multiple Chemical Sensitivity Disorder (MCS) and Environmental Illness (EI) are “handicaps” within the meaning of subsection 802 (h) of the Fair Housing Act (the “Act”), 42 U.S. C. 3602(h), and the Department’s implementing regulation, 24 C.F.R. 100.201 (1991). In sum, MCS and EI can be associated with physical impairments which substantially impair one or more of a person’s major life activities. Thus, individuals disabled by MCS and EI can be handicapped within the meaning of the Act. However, while MCS or EI can be handicaps under the Act, ordinary allergies generally would not be.”

MCS (Environmental Illness) and Social Security

Environmental Illness is explicitly recognized by Social Security. Their diagnostic code as used in the Social Security Administration’s current Program Operational Manual System, or “POMS Manual,” for Environmental Illness is DI 24515.064.

Landlords

However, due to wearing a mask, having been homeless, and being ill, landlords will often discriminate against you when you finally find a safe nontoxic home even though you will save the landlord much money because you will stay and take care of the place as you know how precious safe housing is. This discrimination is illegal but sadly what is fair and what is legal are not the same. My old landlady wanted to sell the building and forced me to move because prospective buyers are afraid I have a “plague” because they need to wear the provided Tyvek coveralls (for my protection, not theirs) before seeing my apartment. This unjust woman has MCS and so do her kids and her sister, plus she is a lawyer, who always said the ADA is to protect landlords not disabled people. If I were able bodied without MCS I would not have been forced to leave the one safe place I have in the world.

Yes, she broke the law. And as with most discrimination there is nothing I can do. Even though I have a glowing letter of thanks from her for taking such good care of the place, got almost my full security deposit back and she gave wonderful references to other landlords, she told the Human Rights Committee I was a bad tenant who did much damage. While I could prove easily that she was lying about why she refused to renew my lease, to prove it was because of discrimination, while doable, would have only gotten me an apology! All that work for nothing!

Also this is a good reminder that those with MCS like most people put themselves first.

For any ADA discrimination issue, I suggest going to your state’s Human Rights organization. To make their job easier, have all the information from these links for them. Precedent sets the law and we have enough favorable precedents (and no unfavorable ones of which I know), that in the hands of a decent lawyer, we can win. Choose your battles. Housing that receives government funding has to do the reasonable accommodations and modifications on their dime. Private landlords, you have to pay. Private landlords are known to be dodgy, profit always comes before people. Doing lots of work yourself and then being illegally removed from your home could be devastating. Private landlords, if being a landlord is their main income and also if they are lawyers, see tenants as the enemy. I have had to talk down hysterical lawyer landlords who were already on an offence-defense using FOG, fear obligation and guilt, to keep us from having a normal conversation. Landlords I have had who had lives aside from being landlords were wonderful, kind and talked to me as a person. My experience has shown me that renting from someone who wants peace not someone trained to win even if they are wrong is much less stressful. Lawyers have to be emotionally coddled, especially when they know they are breaking the law. it’s very draining to care take their feelings. My theory is that guilt is destroying them and their irrationality is from trying to justify doing harm to others to make money. My non-lawyer landlords treated me like family and we worked very harmoniously and I stayed for years, saving them a lot of money on painting, an empty apartment for rent losing income, renovations, etc.

Hint: Most people hate being a landlord. Second HINT: All they want is to save money. Third HINT: Any promises made when you look at their apartment as they swoon all over you to get that money, have those promises in writing. Fourth HINT: You never have to disclose your disability to a landlord. Even when negotiating ADA needs. A doctor may have to write a note saying that your requests are necessary, but they never have to disclose why.

Subsidized Housing (& the Nightmare of Nonprofits)

With government funded nonprofits (which is almost all nonprofits, as they exist mostly due to government grants), you have more leverage. Things in your favor: They usually assume disabled people are stupid. They cannot afford decent lawyers. They do not want to be in the news. They are used to people giving up. Nonprofits are known to hire the very best, caring people 5% of the time and people who cannot get higher paying work because they are incompetent and rude 95% of the time. (I learned this from a mentor at a nonprofit where I interned in college.)

A nonprofit has a boss: the grant givers, ie the government, and has to meet the goals of the grant givers, ie the government. Do not have any illusions that helping you is their main priority. I worked in that sector and have many friends who still do: The only goal of any institution is to protect itself, so their goal is get more funding by succeeding at what the grant givers, ie the government wants from them. You do not matter unless you fit a grant’s goals.

Disablity housing refuses many people with MCS illegally. My favorite document is an oldy but goodie, where many wonderful precedents are listed by the government for the government.

Legal Opinion: GME-0009
Index: 9.207
Subject: MCS Disorder and Environmental Illness as Handicaps
March 5, 1992
MEMORANDUM FOR: Frank Keating, General Counsel, G
FROM: Carole W. Wilson, Associate General Counsel for
Equal Opportunity and Administrative Law, GM
http://www.hud.gov/offices/adm/hudclips/lops/GME-0009LOPS.pdf

Social Workers

I turned down OSU’s MSW program when I realized I’d have the lowest paying graduate degree and be burnt out in 6 months of yelling at people in need “I’m sorry, I cannot help you, we have no money, good luck.” (Like my case manager did to me until I showed her agency the ADA info below.) I’d either stress out and hate myself for not making any difference in the world or I would burn out and hate all our clients for demanding I do what the agency’s website promises. While in massive student loan debt. I hope this gives you an idea of why social workers are often so lazy and rude. Like doctors, social workers hate lost causes. Either the person burns out trying to be fair in an unfair system or becomes cold and uncaring. There is a reason doctors will refuse patients with chronic illnesses. They hate ambiguity and failing as much as anyone else. Not being able to “fix” someone or even ease their suffering makes doctors and social workers upset and they often take it out on the patient or client. You may have experienced this with your family and friends, as they turn their rage about their powerlessness and grief about losing the future they wanted with you, on you, instead of owning their own feelings and working with them without blaming you for having experienced random misfortune.

I have been informed I see the other person’s side too much and cut them far too much slack. However, I hope this information helps you understand why you are treated terribly by people who are paid to help you.

As there is no funding for programs, a social worker can get to the dead ends for you. Mine, all young and idealistic, adoring me as social workers always do since I’m proactive and really am trying to improve my life, promised the moon. Not only did she get me nothing, she didn’t have the courage to tell me they took her off my case. For three weeks I emailed and called thinking we were still working together. I found out via gossip I no longer had an advocate. People cannot handle the reality of living with MCS. They think they can help us and then are shocked when they see how discriminated against we are. Then they leave. Most therapists also cannot handle our reality and so will try to convince us of one that makes them feel better about the world. No one wants to know what we know about the environment and the cruelty of humans.

Peer Groups (like Independent Living Centers)

The ILC goal is to help disabled people mainstream and stay out of the nursing home/rehabilitation home racket. Sadly, due to the financial and political power of the nursing home and home health care industry, independent living programs are barely funded. Medicaid will pay $3000 a night for me to be in a nursing home, sharing a room with someone, no control over even my food or bedtime or pay $10 an hour 12 hours a week for home health care so I can live independently. Remember, it’s always about the money. Independent Living is an underfunded theory of Utopia. Disabled people were freed from the prison workcamps and put into the community and then abandoned. Also the community doesn’t want disabled to join them due to ADA financial fears. Many people would rather disabled people be warehoused out of site out of mind. Because many places are inaccessible, people often say they never have heard any complaints from the disabled community. Obviously that is due to the fact that they live in a world where disabled people are often barred. For most disabled people the world is 1950 but instead of “Whites Only” signs, there are “Able Bodied Only” signs on most doors – doors of doctor offices, therapists, co-ops and health food stores, health centers, places of worship, sidewalks: Let MCS remind you that you are in a community of 1 in 5 Americans with a disability, an oppressed minority, but the also the largest minority in the US.

However, ILC goals and MCS needs are very different. For our survival we need to be removed from society and its daily toxic cesspool, not get trained for a minimum wage job, live in one room in a flophouse and be grateful for wheelchair lifts on buses and ramps at our doctor’s office. (I need those ramps, but it’s not an MCS issue.) While the city of Halifax has banned secondhand fragrance, like secondhand smoke is banned most places because one person’s bad personal choice should not endanger the lives of others, almost all of the world is off limits to persons with MCS. We cannot call ahead and ask if there is fragrance or make a map of accessible places, like someone can about stairs and ramps.

ILCs tend to run by persons with disabilities or PWD (wording that emphasizes the person, not the disability). Very few have any training in conflict transformation, nonviolent communication, consensus, collaboration, active listening, being an ally, etc. Often they mimic the same defensive, paternalistic, arrogant models of the only authority they know: social workers, government agencies, doctors, teachers, etc. but with a chip on their shoulder as they were told they’d never have power. Very few volunteers have much information on any services other than ones they use. And they usually have no money. If you study any rights movement, you can see that most just take on the form of their oppressor, with much emotional baggage, and have no education in other forms of leadership and power.

Still, I highly suggest learning the history of the Disability Rights Movement. It is also our people’s history. The book “No Pity : People with Disabilities Forging a New Civil Rights Movement” by Joseph P. Shapiro is the best I have found.

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