Attitudinal barriers, fragranced products, and invisible disabilities

Having been housebound for far too many years due to having to avoid exposure  to common, everyday products and materials that disable me, has given me time to observe the world (and sometimes even make a little sense of it).

Still, there are some things that make no sense. With over 404,207 Ontario citizens diagnosed with MCS, and 740,370 with one or more diagnoses of MCS, FM, and/or CFS (ME) (in 2016), why hasn’t the Ontario government done anything about the Task Force recommendation to raise

Public Awareness

To enhance public recognition of the conditions, reduce stigma and improve care, the education working group has identified key audiences to target with awareness messages including:

•the general public
•medical specialties strongly associated with the conditions including rheumatology, internal medicine and endocrinology
•employers
•social services
•housing providers
•family caregivers.

(from the Interim Report of the Task Force on Environmental Health which was released in Sept. 2017)

also

“People living with ME/CFS, FM and ES/MCS experience stigma in many non-medical contexts – both formal and informal – and this stigma has a significant negative impact on their quality of life. For example, landlords, employers, friends, family or caregivers are often skeptical about the severity and impact of their conditions.”
…
“Stigma has a devastating effect on Ontarians living with ME/CFS, FM and ES/MCS and their families”

“For all three targets of the awareness campaign – general public, health care facilities and primary care settings – the purpose is to raise awareness of the conditions and their disabling impact on the people who have them.”

Recommendation 1.1

Develop awareness materials that target the general public and specifically engage priority groups, starting with employers and landlords.

The task force recommends the ministry support the development of materials that can be widely disseminated to the general public over time.

The task force also suggests that the ministry work with government partners to communicate the key messages widely and encourage appropriate accommodation.    (SStP note: accommodation is also the law)

~ final report of the Task Force on Environmental Health which was completed in Dec. 2018 and released in May 2019

So, other than industry interference, what’s holding them up?

I suspect it has a lot to do with attitudinal barriers, both theirs and the general public’s!

What are attitudinal barriers?
According to the CDC:

“Attitudinal barriers are the most basic and contribute to other barriers. For example, some people may not be aware that difficulties in getting to or into a place can limit a person with a disability from participating in everyday life and common daily activities.

Examples of attitudinal barriers include:

Stereotyping: People sometimes stereotype those with disabilities, assuming their quality of life is poor or that they are unhealthy because of their impairments.

Stigma, prejudice, and discrimination: Within society, these attitudes may come from people’s ideas related to disability—People may see disability as a personal tragedy, as something that needs to be cured or prevented, as a punishment for wrongdoing, or as an indication of the lack of ability to behave as expected in society.

Today, society’s understanding of disability is improving as we recognize “disability” as what occurs when a person’s functional needs are not addressed in his or her physical and social environment.

By not considering disability a personal deficit or shortcoming, and instead thinking of it as a social responsibility in which all people can be supported to live independent and full lives, it becomes easier to recognize and address challenges that all people–including those with disabilities–experience.”

Disability and Health Disability Barriers | CDC
Common Barriers to Participation Experienced by People with Disabilities

Nearly everyone faces hardships and difficulties at one time or another. But for people with disabilities, barriers can be more frequent and have greater impact. The World Health Organization (WHO) describes barriers as being more than just physical obstacles. Here is the WHO definition of barriers:

“Factors in a person’s environment that, through their absence or presence, limit functioning and create disability. These include aspects such as:

a physical environment that is not accessible,

lack of relevant assistive technology (assistive, adaptive, and rehabilitative devices),

negative attitudes of people towards disability,

services, systems and policies that are either nonexistent or that hinder the involvement of all people with a health condition in all areas of life.” 1

Often there are multiple barriers that can make it extremely difficult or even impossible for people with disabilities to function. Here are the seven most common barriers. Often, more than one barrier occurs at a time.

Attitudinal
Communication
Physical
Policy
Programmatic
Social
Transportation

…

Policy Barriers

Policy barriers are frequently related to a lack of awareness or enforcement of existing laws and regulations that require programs and activities be accessible to people with disabilities.

Examples of policy barriers include:

Denying qualified individuals with disabilities the opportunity to participate in or benefit from federally funded programs, services, or other benefits;

Denying individuals with disabilities access to programs, services, benefits, or opportunities to participate as a result of physical barriers; and

Denying reasonable accommodations to qualified individuals with disabilities, so they can perform the essential functions of the job for which they have applied or have been hired to perform.”
…

(There are so many barriers faced by people with MCS/ES that they are called “systemic barriers”, meaning they are everywhere and affect every part of life)

…

Anyway, since Ontario is doing nothing about “the development of materials that can be widely disseminated to the general public over time” (from recommendation 1.1 above), and since all the accessibility barriers not only continue to exist, but seem to be multiplying over the years, and since I sit here unable to do much of anything except try to find solutions to the suffering I and so many others experience,  while experiencing severe brain fog and other problems due to the systemic barriers, I play with images, and over time, I’ve generated quite a few to fill in the glaring void, but inevitably, some come with a dose of snark.

Due to the lack of official actions, and a lot of attitude, most people are still choosing products over the well-being of other people. This gets old… so here is my latest (really, all it takes is a decision to become fragrance-free,and then it’s easy):

This is more of a public health PSA than one that is geared only  for people with MCS/ES and all the others who are immediately adversely affected by exposures to fragranced products, because quitting fragrance will have benefits equal to or greater than quitting smoking as far as public health is concerned.

The final report didn’t have much emphasis on removing accessibility barriers (or creating fragrance-free environments), it was more focused  on increasing general awareness, although they did admit:

“The task force has heard anecdotal accounts of patients, particularly those
with ES/MCS, avoiding hospitals even when they need them.”

and

“A major barrier for people living with ME/CFS, FM and ES/MCS is a lack of awareness of these conditions on the part of providers and staff in health care settings, which means they are often unwilling to accommodate patients when they seek care.”

So why are fragranced products accessibility barriers, and  fragrance-free policies so important for people with MCS/ES?

National Prevalence and Effects of Multiple Chemical Sensitivities (USA)

“When exposed to fragranced consumer products, 86.2% of those with MCS experience one or more types of health problems, including respiratory difficulties (50.3%), migraine headaches (46.9%), mucosal symptoms (46.9%), skin problems (37.9%), and asthma attacks (31.7%). Similarly, 81.2% of those with chemical sensitivity report one or more types of health problems when exposed to fragranced products.”
…
For 76.0% of people with MCS, the severity of these health problems was potentially disabling according to the criterion of the Americans with Disabilities Act Amendments Act of 2008 (ADAAA), asked by the question: “Do any of these health problems substantially limit one or more major life activities, such as seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, or working, for you personally?”
…
Fragranced products also restrict access in society:
58.6% of individuals with MCS are unable to use public restrooms that have an air freshener, deodorizer, or scented product;
55.2% are unable to wash their hands in a public place if the soap is fragranced; 63.4% enter a business but then want to leave as quickly as possible due to a fragranced product; and
70.3% have been prevented from going someplace because of the presence of a fragranced product that would make them sick (See Table 4).

Significantly, 60.7% of those with MCS lost workdays or a job in the past year due to illness from fragranced product exposure in the workplace.
Further, 71% of those with MCS would support a fragrance-free policy in the workplace, and 82.1% would prefer that health care facilities and professionals were fragrance-free” …

and in another study

International prevalence of fragrance sensitivity

“For 9.5% of the population, the severity of health effects can be
considered disabling.”

Canadian Lawyer Magazine:
Human rights and housing resources for environmental sensitivities released

…“Common triggers of environmental sensitivities in apartments are perfumes, air fresheners, cleaning products, paint, fumes, and laundry detergent, the new toolkit said.
…
This resource is especially unique because it brings the community, the law and the medical profession together to address the housing, legal and health needs of renters living with an environmental sensitivity disability,” the foundation said in its statement.”

…

I don’t expect images like mine would qualify for this:

“Messages be visible on ministry-supported mediums such as web sites and social media.”

but since they have nothing, at least I am offering something.

If people need ‘polite’ images that cater to those who are totally uninformed or those who have attitude barriers and are easily offended, they will have to find people who haven’t been excluded from society for as long as I have, and who have access to the hive and honey. I’ll add some vinegar. It’s good for cleaning.

Speaking of honey:
Bees’ ability to forage decreases as air pollution increases

Keep in mind too, that:

“Cooking, cleaning and other routine household activities generate significant levels of volatile and particulate chemicals inside the average home, leading to indoor air quality levels on par with a polluted major city, CU Boulder researchers have found.

What’s more, airborne chemicals that originate inside a house don’t stay there: Volatile organic compounds (VOCs) from products such as shampoo, perfume and cleaning solutions eventually escape outside and contribute to ozone and fine particle formation, making up an even greater source of global atmospheric air pollution than cars and trucks do.”…

…

If I can’t laugh at the absurdity of policies that promote choosing products over people, then there’s little reason to keep getting out of bed everyday.

…

“Once you decide you CAN change products and survive without turning into a hot, melting puddle of toxic piss and vomit, you can do it easily!”
Quit fragrance!
Be fragrance-free! It’s good for me! It’s good for you!

…

If you’re still using fragrance,
what’s stopping you from quitting now?