The Effort and “Inconvenience” of Single-Handedly Trying to Remove Systemic Barriers to Access

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When she needed accommodation, you won’t believe the rigmarole that ensued.

(unless you have MCS/ES)

equal opportunity 1

“They should not have to make significantly more effort to access or obtain service. They should also not have to accept lesser quality or more inconvenience.”

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Someone with MCS (who wishes to remain anonymous) was asked about how her efforts to receive appropriate, safe, accommodation were going, so she could see a health care provider. She is one of a growing number of people who become disabled from exposures to toxic chemicals found in many everyday products and materials, especially in fragrances.

This is pretty much how the story goes:

She contacted a health care provider by phone and talked to a receptionist.

She asked her if they had a scent-free policy and was told they didn’t.

She described some of the things that could disable her, things like perfumes,  laundry detergent/fabric softener, scented personal care products and air fresheners, and asked if their office had ever accommodated anyone who had adverse reactions to these things and was told they hadn’t.

She asked them if anyone at the office was already fragrance-free and was told they weren’t.

She asked if there were any air fresheners, candles, or other fragrance emitting devices  used in the office and was told that someone would look into all these things and would get back to her.

The office didn’t get back to her.

It took a month to be able to do a follow-up (remember that people with disabling MCS/ES don’t have the same energy and abilities that healthy people do).

Not surprisingly, the next person who answered the phone said there was an air “freshener” in the washroom. They were asked if it could be removed before the appointment (air “fresheners” need to be removed before a major cleaning and then allowed to air out even more, as the oils are very persistent pollutants).

The office was asked again if anyone was already fragrance-free or willing to go fragrance-free. They agreed to look into it and get back to her.

Again there was no response returned, which meant more delays and more calls.

At this point it was obvious that the office needed some more help so the offer was made to provide documents and suggestions to aid with the process (meaning more work and energy had to be expended by the disabled person seeking accommodation in order to safely receive health care services).

Several weeks after the original inquiry, it wasn’t even sure that the actual health service provider would go fragrance-free, or if it was just an assistant who was willing to look into it. There was still a lot of work left to do. This is clearly not an overnight process.

The woman seeking the accommodations had been a patient there before developing disabling MCS/ES. She suspected that they wouldn’t have even agreed to look at the fragrance-free info and answer so many questions had she not been a previous patient.

She had made calls to other area providers and when asked if they were fragrance free,  none were, nor did they respond by saying “We’d be delighted to make ourselves and our offices permanently fragrance-free so that it’s always a safe environment for you to receive our services here!” which is why she decided to try to work with the place she had previously been seen, and why she was being so persistent, as she had no other options.

She hadn’t even brought up that MCS/ES is a recognized disability that must be legally accommodated, nor had she mentioned the CHRC, AODA, or any other  human rights resources. For some reason, many people see that as being too confrontational! Yet, without the law, there’s little hope of receiving “equal” treatment or access to anything.

During this process, she also made the effort to contact numerous companies who make fragrance-free products and asked them for samples, so that she could provide some to the health care providers to use for her appointment, in case they were resistant to going out and buying their own (by law in Ontario, the costs of accommodations are supposed to be borne by the service provider, not the person with a disability who is seeking access to services).

So far, all these efforts were attempts to make the service environment safe enough to venture into and survive. She still has to ask them about AND research the safety and compatibility of any dental materials that may need to be used, before anything can actually go in her mouth.

(Some helpful MCS/ES dental resources can be found here)

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Remember that in the ” “Guide to the Accessibility Standards for Customer Service, Ontario Regulation 429/07”, it states:

“Equal opportunity means having the same chances, options, benefits and results as others. In the case of services it means that people with disabilities have the same opportunity to benefit from the way you provide goods or services as others. They should not have to make significantly more effort to access or obtain service.
They should also not have to accept lesser quality or more inconvenience.

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Also see: OHRC Policy and guidelines on disability and the duty to accommodate » 5. Undue hardship

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So, months later, there is still has more work to be done before she can risk going in for an appointment to have some necessary dental work done. Despite making all these preparations and taking other precautions, there is still more than a good chance of her experiencing disabling exposures, as the whole office is not going fragrance-free.

We have a long way to go before the systemic barriers to access are removed.

For a person with disabling MCS/ES, these exposures can take days to weeks to recover from, during which time they will probably be unable to work (even from home) because providing safe and appropriate accommodations so that people with  MCS/ES can have safe access to even the simple basics of life, is not yet a serious part of the accessibility mandate, despite the fact that accommodating people with MCS/ES is required by law here and would also improve health and well-being for everyone.

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In 2010,  almost 300,000 people had been diagnosed with MCS in Ontario alone, and  environmental sensitivities have been a recognized disability requiring accommodation (Ontario 2000, Canada 2007).

One would think that this was plenty of time for the systemic barriers to be removed, with legally binding and enforceable directives from the top down, not one exhaustingly slow step at a time by the people who are often so disabled, isolated, (invisible) that they themselves  are in need of assistance and advocates (who as a result of the systemic discrimination also don’t exist) for the basic needs of daily living, all circumstances which perpetuate the lack of change.

In fact, instead of more accessible places, there are fewer now, as fragrance chemicals have been added to so many more products and materials over the years, perhaps in poor attempts to cover up the cutbacks in cleaning staff, and the increasingly cheap and toxic products and materials that emit other harmful VOCs into the air we all breathe.

When seen like that, it becomes clear that making places accessible for people with MCS/ES actually serves to provide healthier environments for everyone. Who wouldn’t want that to happen?

Who wants to have teeth extracted at home because they have been severely infected for years and there’s still no safe place to have them pulled?

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Shouldn’t everyone have the right to breathe clean air?

Shouldn’t everyone be able to access safe, non-toxic essentials for life without it taking months of planning for ONE appointment?

What if there’s an emergency?

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Be fragrance-free! It’s good for you! It’s good for me!

ACCESSIBILITY 1

Indoor Air Pollution can be eliminated. It can be done. Let’s make it happen.

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6 responses to “The Effort and “Inconvenience” of Single-Handedly Trying to Remove Systemic Barriers to Access

  1. My own experience is that rather than using scent-free soap – my dentist of more than 25 years FIRED me for having two anaphylactic reactions to fragrance in his office. He also did NOT find another dentist for me after FIRING me. I went without dental care for almost three years. This is the experience of so many…

  2. It’s very sad but we are just not ‘good for the business’, not ‘profitable’, too much ‘special treatment’ to be ‘worth it’, just left feeling extremely abandoned : (
    No money, work, pension to afford treatment or means and strength needed to travel to specialist EI/MCS clinic to recieve it : (
    Feeling doomed : (
    NO ACCESSABILITY HERE! Refined to my ‘home arrest’ in my limited, relatively safe, environmentaly controlled zone trying to suffer the least amount of toxic tresspassing possible (the scorching heat and offgasing of VOC’S is so much worse now) I’m not really sure we have any ‘rights’, maybe some ‘virtual rights’ on paper or in documents somewhere but no ‘real rights’, like those that really happen : (
    I hate summertime here, it’s just begun and I already wish it was over!
    Just have to try to get through it best as I can, really clamping down on avoidance of exposures, with all this increase in wifi etc…in ‘high season’ here when tourists triple or quadriple the local population the Electromagnetic Hypersensitivity becomes unbearable!

    Big Reiki hugs ♡♡♡

    • Agree… summertime sucks now, so many VOCs in the air (I have a blog post about that somewhere)

      But I disagree about us not being good for business. We are by-products of the toxic economy, and we are not good for that kind of business… but that business model isn’t good for anyone – look at the state of the world now – scientists are saying the 6th mass extinction is coming – this business model is killing us all!!!

      BUT we are VERY good for a healthy economy and a healthy business!!!

      There’s a HUGE market for chemical-free, non-toxic products and materials!

      AND, if we are accommodated before disability, we can remain active members of society, teaching and encouraging healthier, sustainable ways of living.

      Heck, if businesses want to learn how healthy their products and processes are, they should be bending over backwards giving us things they manufacture or sell, to see if they are VOC free and non-toxic “enough”, and paying our health care costs when they mess it up!

      Of course, they would need to conduct lab testing before subjecting us to questionable toxic fumes or substances…

      If products pass muster with the most “sensitive” among us, they will be safe for future generations too!

  3. Please refer your accessibility issues to the National Research Council of Canada, referencing Can. Code Change # 496, Environmental Sensitivities.
    It is recognized for Indoor Air Quality to be addressed in the National Building Codes of Canada. I fought 10 years for this, and won the recognition. Now,, lets see what they do! Get on the band wagon!
    N.Lantz CBI (former Certified Building Inspector, now 20 years disabled with MCS )

    • Thanks Nelson. That’s really interesting!

      Is it for federally operated buildings or applicable to all buildings? (I searched online and the info didn’t seem to be available)

      What is your experience regarding the successful application of that code?

      I also wonder if building codes can address enough ventilation (and filtration) to remove all the toxic products and materials we now are pretty well forced to buy and use (unless one makes a really concerted effort to avoid them).

      This place came with an HRV (which broke and hasn’t been replaced as the one that was bought was full of VOCs which it spewed into my air, so had to be removed and they never replaced it with a safe one), and in addition to regular outdoor air, the original one sucked in all the toxic laundry fumes and woodsmoke, without filtering any VOCs or enough particulate, so for ventilation and IAQ purposes, it wasn’t all it was cracked up to be… especially the replacement…

      I learned that building codes for dryer vents were only taking moisture into account, nothing there about all the toxic chemicals that get spewed out of them now. There was something similar for chimneys, the codes were based on fire, not pollution…

      I wish all buildings had VOC monitors by the front door (and elsewhere) so we could see if any are safe to venture into.

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