R.S. Hurley is an advocate in California who is disabled with the environmental illness (EI) multiple chemical sensitivity (MCS). As a Section 8 voucher holder, she has spent decades working to secure her own reasonable accommodations for accessible/medically safe housing and to support hundreds of other renters living with EI. Ms. Hurley is the author of Guide to the HUD Section 8 Housing Choice Voucher Program for Persons Disabled with Multiple Chemical Sensitivity. Although Hurley’s guide focuses on chemical sensitivity, people who are electrically sensitive and have other disabilities will find it useful.

Hurley spoke with the NLIHC field team to share her experiences, the impact of her advocacy, and the changes she hopes to see from HUD.

Q: Can you describe your personal experiences with environmental illness?

A: I became disabled with MCS after moving into a completely remodeled home. I was sick all the time with week-long migraines. I didn’t know what was causing my illness until a chiropractor suggested that it could be chemicals off gassing from the carpet.

Unfortunately, once you have MCS, it’s a permanent condition. There’s no cure. Your health deteriorates with each chemical exposure. The treatment is to avoid exposures, which is impossible in today’s world because our lives are inundated with common chemicals that we are told are harmless. A lot of people think MCS is all in your head. I was diagnosed by an EI specialist in 1999 who said “You’re not crazy. You have something called multiple chemical sensitivity.”

Q: How has your environmental illness affected your housing situation? 

A: EIs (those with EI) have difficulty getting our accessible housing needs met through Section 8. Even though the Fair Housing Act stipulates disabled persons are entitled to exceptions to regulations in order to provide reasonable accommodations (RAs) for accessible housing, the problem is Section 8 case managers are prejudiced against the illness and deny our RA requests.

Tragically, finding a home that is accessible for an environmental disability is like trying to find a needle in a haystack. Even if you have all the money in the world. E.g., new building materials, paint, cleaning products, mold, pet dander, and fragrances from previous tenants are intolerable. Therefore, we usually have to ask for extensions on our search terms, or ask for a higher rental subsidy to afford an accessible unit. Too often, case managers deny these RA requests.

I’ve had excellent case managers and I’ve had terrible managers. For the most part, trying to get my RA requests approved has been challenging.

People with EI can’t live in multifamily housing because we would be exposed to all kinds of toxins that we have no control over, like grounds maintenance chemicals and fragrance wafting from a neighbor’s apartment. Instead, we need to rent single-family homes, which are unstable because a landlord might need the rental to house his/her own family, or decide to sell. For this reason, I’ve had the misfortune of having to seek numerous single-family rentals. Having to convince different Section 8 offices to approve my RA requests has been exhausting.

Q: What inspired you to write the Section 8 advocacy guidebook?

A: People disabled with EI struggle to get their disability-related housing needs met through Section 8. I was angry at how often people with MCS were being persecuted against, despite the Fair Housing Act and Section 504 of the Rehabilitation Act of 1973. I wanted to tell people “If this is happening to you, sue your Section 8 office!” Fortunately, my beta reader helped me see the most important thing was to help people understand the regulations so they could advocate for their needs. I received guidance from distinguished people in the field, including author/videographer Alison Johnson and medical/legal consultant Ann McCampbell, MD. I was inspired by Bennie Howard, a former director of HUD’s Office of Disability Policy. The knowledge required for my guidebook project was a result of Bennie’s mentorship.

Q: What are the greatest successes and challenges you’ve encountered in your work?

A: Since 2017, I have distributed 700 free guidebooks. I have counseled approximately 100 people and helped them turn negative housing situations to positive. E.g., one person disabled with MCS lost her voucher because her case manager refused to extend her search term. HUD’s regulations allow unlimited search terms if needed by a program participant who has difficulty finding accessible housing due to a disability. Her voucher was wrongly terminated. A year later I helped her reinstate it.

My greatest challenge now is getting what I need from my own Section 8 office. Initially, this office didn’t know how to accommodate my disability but were willing to learn. Later they hired a case manager who was prejudiced against my disability. Since then, it’s been a horror story.

The biggest struggle is the toll it takes on our health to fight for our rights. Most EIs are severely disabled, struggling to make it through our days. Yet we have to learn HUD regulations to advocate for our accessible housing needs – we can’t depend on housing case managers to be helpful – even though that is what they are paid to do!

Producing this guidebook was a labor of love. Countless disabled people need help to keep a roof over their head, yet the project took a toll on my health.

Q: What do you see as the next steps for the movement? What policy changes would you like to see?

A: First – HUD transfers training for public housing agencies (PHAs) (e.g., Section 8 offices) to an outside agency. Consequently, the rights of those protected by the Fair Housing Act fall by the wayside. I advocate for PHA training to be provided by HUD’s Office of Indian and Public Housing, which oversees Section 8 and promotes fair housing.

Second – PHAs should be routinely audited by HUD Headquarters’ staff to ascertain all PHA offices are compliant with fair housing law.

Lastly – There is need to establish an entity that only handles discrimination complaints against PHAs. Currently, HUD’s Office of Fair Housing and Equal Opportunity (FHEO) handles all housing discrimination complaints. This works well for tenants that have a discrimination complaint against a landlord. Contrarily, when a disabled person files a FHEO discrimination complaint against a PHA, it is like asking HUD to police itself and the disabled participant loses out.

To receive a complimentary download of the Guide to the HUD Section 8 Housing Choice Voucher Program for Persons Disabled with Multiple Chemical Sensitivity, visit http://chemicalsensitivityfoundation.org