Dear Minister of Health, we’re ready for action!
According to official statistics:
250,000 Ontarians had been diagnosed with MCS in 2014
and the discrimination is still systemic in 2018
SUBJECT: Accommodation for People with Disabilities
Honourable Helena Jaczek, Minister of Health (at firstname.lastname@example.org )
On September 29, 2017, Ontario quietly released the report “Time for Leadership: Recognizing and Improving Care” for those with myalgic encephalomyelitis /chronic fatigue syndrome, fibromyalgia, and environmental sensitivities /multiple chemical sensitivity (ME/CFS, FM and ES/MCS). This report was produced by the Task Force on Environmental Health for the Ministry of Health and Long Term Care.
The report found that throughout the Ontario health care system and in society at large, there is:
• a lack of recognition of the seriousness and severity of these conditions
• a profound shortage of knowledgeable care providers
• a dearth of clinical tools to support and guide care
• a discouraging shortage of services and supports for people living with these conditions
• an absence of support for family caregivers
The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.
Statistics from the CCHS survey of 2014 revealed that over 550,000 people in Ontario have one or more of these conditions, and the numbers continue to rise.
Too many people with these chronic, complex, and disabling illnesses are completely excluded from and neglected by our health care system, while others with illnesses of comparable severity and prevalence receive a high standard of funding and care.
As a voter whose life has been significantly impacted by one or more of these disabling conditions, I am deeply concerned about the lack of progress when human rights continue to be violated on a daily basis by systemic barriers in both health care and in society.
The Task Force called for immediate steps to be taken. Among the first steps are recommendations to:
1. Change the conversation and increase understanding.
2. Develop a common clinical understanding.
3. Lay the foundation for a patient-centred care system.
4. Increase the availability of providers who understand ME/CFS, FM and ES/MCS.
Their steps of recognition, funding for research and education, and transforming attitudes and health care spaces would lay the foundation on which a new and inclusive approach to care can be built, resulting in saving both lives and money, where people with these disabling illnesses can finally begin to receive the care and services that are needed.
The Ontario Human Rights Code protects people from discrimination and harassment because of past, present and perceived disabilities. Organizations and institutions operating in Ontario have a legal duty to take steps to prevent and respond to breaches of the Code.
Therefore, I respectfully request that the Minister of Health and the Ministry of Health and Long Term Care begin the process of ending the systemic discrimination against people with ME/CFS, FM and ES/MCS, and start removing the accessibility barriers in health care and in society, by immediately adopting the recommendations made in the Task Force on Environmental Health’s Interim Report, and when the final report is released this fall, I call on the government to include funding to implement all of their recommendations.
I call on all parties to commit to taking these actions right away.
I ask that my Member of Provincial Parliament support me in calling for the Minister of Health and the MOHLTC to take the above mentioned actions without further delay.
As this is an urgent matter, with the lives of real people at stake, I ask that you act with haste, and I look forward to receiving your response.
Seriously “Sensitive” to Pollution
OHRC Code Grounds > Disability 2.2 Non-evident disabilities
“The nature or degree of disability might render it “non-evident” or invisible to others. Chronic fatigue syndrome and back pain, for example, are not apparent conditions. Other disabilities might remain hidden because they are episodic. Epilepsy is one example. Similarly, environmental sensitivities can flare up from one day to the next, resulting in significant impairment to a person’s health and capacity to function, while at other times, this disability may be entirely non-evident. Sometimes, a person’s disability may be mislabeled and misunderstood.”
It’s clear they already understand there are systemic barriers from the Government’s own “How to create an accessibility plan and policy” document that was posted to their site in 2015, yet they haven’t done much about it as health care is still not accessible, and barriers are everywhere else too.
In Appendix B of their own accessibility guide, they discuss systemic barriers:
“Systemic barriers in policies, practices and procedures and result in people with disabilities being treated differently than others or sometimes excluded altogether.”
and they list this as a systemic barrier:
“Procedures may exclude some employees, such as directing maintenance/housekeeping staff to only use certain cleaning products that can cause allergic reactions.”
and this as a possible solution:
“Implement a “fragrance-free” policy.”
(P.S. Putting up a sign, without enforcement, does not remove the barriers)
They also have this understanding about events planning that never made it to the health care sector (just try asking for fragrance-free accommodation in an emergency or on arrival):
|People with disabilities are excluded from events, or included as an after-thought when planning events.||Make sure that accessibility is considered when making plans for events and invite attendees to tell you if they have different needs. Consider using an accessibility checklist for events.|
If any of you reading this feel so inclined, please feel free to take advantage of this opportunity to ask that our human rights be respected in Ontario.
You can copy and paste the letter and email it to the Minister and your MPP (if you live in Ontario). Click > here < to get contact info for Ontario MPPs.
Sign with your:
You can also copy these people on the email by entering their email addresses on the ‘CC’ line:
PC Health Critic MPP Jeff Yurek at email@example.com
NDP Health Critic MPP France Gelinas at firstname.lastname@example.org
and blind copy Millions Missing Canada for tracking purposes by adding
MillionsMissingCanada@gmail.com to the “BCC” line
(this letter was written with the help of Millions Missing Canada)
If you are health able and don’t hear back from them (as sometimes their manners may be missing too):
1. Follow up your letter with a phone call, another email, or ask for a meeting with your MPP.
Ask for a solid commitment. This can be done every 10 days or so.
2. During the election campaigning in Ontario, when a canvasser comes to your door or calls, ask for their commitment to support implementing this Report.
It could be helpful if you would ask other people (like everyone you know) to also send an email, so that we aren’t systemically ignored, abused, and discriminated against for another 30+ years.
It doesn’t matter if you are not in Ontario, you can still ask them to adopt the recommendations, but you might want to revise the letter just a little to reflect that while you live elsewhere, it’s important to you because you know people here, and that you think no-one should be discriminated against for decades (feel free to personalize your reasons if you wish).
This is the report that was referenced if you haven’t already seen it:
“Time for Leadership: Recognizing and Improving Care is a report from the Minister’s Task Force on Environmental Health, which recommends improving the understanding and recognition of environmental health conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and environmental sensitivities/multiple chemical sensitivity.”
The full report is available for download in PDF format below:
I previously summarized some parts of the report here and there’s more info from one of the original Task Force members here.
At least 553,100 people, plus friends, families, and communities are affected!
Ontario stats for 2014 from the TFEH Interim report (with revised formatting):
Did you know there’s over a million Canadians diagnosed with MCS, when few doctors even understand environmental health?
There are hundreds of thousands of Canadians diagnosed with ME/CFS and FM who are similarly forced to struggle through atrocities due to the systemic discrimination and neglect from those in positions to act to end the systemic barriers now, and make sure that our needs are met just like those of other Canadian citizens.
For the latest US statistics, that show an incredible jump in the number of people affected, please see the STATISTICS page at the top of this site.
For far too long, we have remained silent and invisible. Now’s the time to speak up and let them know that while we may be lying down from the pain, we aren’t going to accept a lack of action anymore!
I wonder if more rather than few doctors understand about environmental health but there isn’t much they can do because they have little if any control over the environment because of corporate control, greed and ignorance along with a government that’s not willing to do anything about it. Just wondering.
It’s possible, but then why are so many people who are affected treated as if the problems are psychological? And why don’t they advocate for change (before they retire)? They could also write prescriptions for things like air and water purifiers, non-toxic housing, organic food, beds and clothing, etc… and write accommodation requests for employment and housing and medical care…
Are you in ontario? I’m looking for some legal resources or just more information on my rights as a person with MCS in a workplace that won’t create a fragrance free environment. Does anything exist?
Please read and familiarize yourself with the OHRC’s Policy on ableism and discrimination based on disability
There’s a section there on undue hardship, where it essentially says
“inconvenience, morale, and preferences are not valid considerations in assessing whether an accommodation would cause undue hardship”.
If they won’t implement a policy, they have to prove undue hardship – why they can’t do it.
It is also said that we’re not supposed to do all the work for them, but if we don’t, they won’t…
Thanks so much!
Do you know if I have to have something in writing? My referral to the environmental clinic got lost. I don’t want to wait another year :(
In the Policy document, it states how to go about asking for accommodation, what your responsibilities are, and what the employer’s responsibilities are.
Asking in writing really is best for the paper trail. You may have to provide a medical letter from your doctor stating how fragrance exposures affect your ability to work.
The policy does mention a company that did create a fragrance free policy in one of the examples somewhere.
There are a lot of other ‘accommodation’ and ‘human rights’ resources on this site (use the search box) but basically, if you read, reread, and reread the OHRC Policy document, copy and paste parts that seem relevant to you, familiarize yourself with how the law works, then you will benefit most, unless you want to hire a lawyer to help. But note that many lawyers are also unfamiliar with MCS/ES so would also need to be educated.
Thanks so much for your help!
Wish I could do more, but I’m just not up to it.
We really need some advocates …
Big time! I wish there were better resources. But I think it’s coming. Your blog is a huge help to me!
I try to post relevant and useful info here.