I am disabled from chemical sensitivities, fibromyalgia, and electro hypersensitivity. My critical and urgent needs list includes: 1) a whole house water filtration system and installation, 2) a washing machine, 3) clothing, 4) a housing search and preparation, and 5) an advocate to help me navigate the processes to secure it all. Are you able to help me in any way?
By Linda Sepp.
I developed Multiple Chemical Sensitivities / Environmental Sensitivities (MCS/ES) in 1994 after a toxic carpet installation in an apartment below mine. I had been slightly “sensitive” to many perfumes and personal care products since the 1970s, only I didn’t know what that meant at the time. These and other experiences led me to research building and construction materials, indoor and outdoor air quality, household products, and the political landscape surrounding MCS/ES and environmental health. When I am able, I continue to spend my functional time researching material to help educate others about the toxic nature of everyday products and how they affect both people and the environment. Most notably, I’ve researched and compiled information on the housing needs of people with MCS, as this is the most important determinant of health and the most difficult component to achieve without assistance and support. I am a contributor at MCS America and other MCS and environmental health organizations. I am a Canadian mother of both two- and four-leggeds, and hope to have safe housing soon, where I can recover enough to become a storyteller who inspires people to do the right thing simply because they can.
My Current Situation
I am disabled and housebound from severe Multiple Chemical Sensitivities / Environmental Sensitivities (MCS/ES) and chemically induced Fibromyalgia (FM) as well as some ElectroHyperSensitivity (EHS). My symptoms and abilities are directly, and often severely impacted by exposure to petro-chemicals, moulds, wireless technologies and high electrical fields, yet most resolve when I am able to avoid exposures. There may be some residual and permanent brain damage, but we won’t know until I have safe housing and the therapeutic supports required to repair and heal the damage.
The director of the Sunnybrook /Women’s Hospital clinic that diagnosed me wrote:
“The most effective means of managing this condition is by avoidance of known triggering chemicals, and minimization of exposure to other ‘everyday’ synthetic environmental chemicals in food, water, air, and consumer products.
As with intolerances to foods themselves, it is highly challenging and expensive to minimize such exposures.” … “She (Linda) requires food (water, air, and consumer products) containing the lowest possible amounts of synthetic chemicals permanently to help maintain, and hopefully improve, her health status.” (2006)
“… In order to avoid repeated episodes of such severe symptoms, Ms. Sepp must avoid exposure to her allergens and chemical and electromagnetic triggers.” (2009)
“In my view, it is urgent that some mechanism be found to assist Ms. Sepp to locate a suitable home to prevent even more suffering and deterioration in her already extremely compromised health.” (2009)
Shouldn’t I have affordable access to these basic things as prescribed by my doctors?
The Ontario Disability Support Program (ODSP), Ontario Health Insurance Plan (OHIP) and the various Ministers of the Ontario Government apparently think not. They are prepared to let me die or is it force me to die, instead of helping me recover.
Living in an old, mouldy house that is leaky, allowing pollution and chemicals used outside to enter and affect me, contributing to my poor health, has still been a better choice for me than being moved to a place with toxic chemical residues which completely incapacitate me. My floor of this house has not had toxic chemicals used since I moved here in 1991. Still, I have been too sick and disabled to survive more than a brief weekly visit to a health food store, never mind a move to a toxic place.
My only other options include homelessness or moving to a $454 room that will become my prison where I won’t be able to leave on my own two feet, where I will be slowly poisoned to death for crimes I never committed. Unless being poisoned and disabled by toxic chemicals in everyday products is a crime.
Let me review the following issues:
1. Chemical free (no VOC) safe housing
2. Tap water
3. Clothing
4. Doing Laundry
5. Shopping
6. Canada Post
7. Other
8. The Landlord’s offer
9. Actions Needed Recap
1. I need chemical free (no VOC) housing away from neighbours dryer vents, agricultural chemicals, cell towers, WiFi and power lines.
My doctors say I need chemical free housing, I have a total of $454 month dedicated for all shelter costs from ODSP. OHIP does not help with this medical need.
According to the Landlord Tenant Board I have until April 2010 to be out of here.
I cannot share air with anyone else, even with others with MCS/ES as we all different.
I have a list of basic requirements as far as the building materials and any renovations are concerned and another one regarding chemical use by occupants (these seem extensive and over the top to anyone unfamiliar with the issues, but my life depends on them)
If safe housing was available for this price, which it is not, I still can’t search on my own.
I can only spend a few minutes a day on the telephone due to severely debilitating symptoms that make further use of the phone even more harmful and damaging and can take days to weeks to recover from. My cognitive abilities are often severely compromised. Many places do not or will not communicate by email.
I have been looking for appropriate and affordable housing since 2005, in different forms, (rentals and for sale at different price points) with the help of many, including family, friends, support groups, someone from Toronto’s Shelter Support Housing Admin (SSHA) and the Center for Equality Rights in Accommodation (CERA).
Some, like my friend Kathi in Nova Scotia, have spent countless hours on the phone (long distance) and online over the years on this. We have not found anything I could afford where I could remain functional. All that I can afford is a place to die. The places I visited in 2005 and 2006 made me quite ill, eventually requiring months to recover from.
I need a qualified expert to inspect a possible place for suitability before I can risk going in myself, and then to design and choose materials and workmanship to make a place safe enough for me to actually live in it and remain independently functional, if a place with the potential to be made suitable were found. I simply cannot visit places without this.
If a place that was safe enough were to be found, it surely won’t be affordable without a subsidy, and will have a ton of regular people in line for it. This means it would be lost even before I had a chance to get it. The province won’t give me a portable subsidy.
My target area has been north of Highway 7, east of Parry Sound, south of North Bay, and west of Perth /Renfrew, in areas without agriculture, industry or other pollutants.
Making any place safe could require several months and I am running out of time.
ODSP and OHIP provide nothing towards this. Neither does anyone else.
2. The chemicals in tap water have been making me sick since January 9, 2009.
In order to avoid chest pains, heart palpitations, dizziness, headaches, breathing problems, and the long term fatigue that comes from dealing with exposures when I wash my hands, dishes, or have a shower, I need a whole house water purifying system like this one. It is now $1999.67 U$ + S&H + duty and tax + exchange rate + professional installation without plastic parts. It was $400 cheaper when I 1st asked ODSP for help with it. Hopefully such a system would allow enough water to pass through the pipes here and reach me upstairs, as the water pressure and plumbing really suck here.
ODSP and OHIP do not cover medically required water filters or installation there-of.
I have been ordering spring water, delivered in re-usable heavy 11 liter glass bottles to drink and cook with, at a cost of $12 a bottle. Sometimes 40 bottles a month.
I have to use this water to wash my only articles of safe clothing, as using tap water, even through double shower filters, leaves residues that feel like my skin is burning and like I am wearing a lead or cement suit that drags me underwater soon after putting them on.
ODSP does not cover safe medically required bottled water. Nor does OHIP.
I had to make a choice; pay for water or pay for heat.
It costs a lot to heat this large old leaky house, an expense that used to be shared with others, especially my mother who lived downstairs in a separate unit. My landlords gave her an offer she couldn’t refuse, to move to an apartment in September 08 where she would no longer have to try to pay attention to the products she used, and where expenses were much lower than here. I was left alone, responsible for all the expenses, despite them knowing that my cheque from ODSP did not even cover half. At the same time, my dependent daughter moved out so my cheque from ODSP was further reduced by about $500 a month, just when I needed it most to cover the much higher expenses. My $454 is supposed to cover all rent and utilities costs. ODSP tells me to move somewhere cheaper.
When the problems with water began in January, I had to start using money from my shelter allowance to also pay for the safe water I need.
ODSP refused to help. I tried to find help from the City but their best response was that they are only required to make the water safe for healthy people.
I could not pay all the gas bills and as a result the gas was cut off on July 23rd. From that time I was no longer able to shower, had to boil water to wash dishes, and carry pots full of hot water to the bathroom in order to have sponge baths (remember that I suffer pain from FM and co-ordination difficulties from the MCS), and then I almost froze to death.
I have a hard time with cold temperatures to begin with due to circulation problems from the MCS/ES. From September 28th the temperature here fell to under 60F, and after 2 weeks it dropped below 50 degrees F. All I had to wear was a set of tattered summer clothes (no socks, no slippers, no hat or gloves or warm sweater) before a number of people made a lot of noise to my MPP, Enbridge and others, and finally someone from SSHA was able to negotiate for 2 days with the OEB to pay the amount owing, but that ODSP would take over paying the gas directly from my cheque.
Since the cost of gas for this large leaky old house is often more than my entire shelter allowance, and the hydro costs are on top of that, it will now come out of my food and basic needs allowance. I am barely able to get enough nutrients as is.
My basic needs and special diet allowances of $554 and $205 just barely cover the organic food and supplements that I require just to keep myself alive, in fact they take up most of that. Cat food and safe for me litter, telephone, tv and internet take up the rest.
Remember that these allowances are designed for people who can buy and use regular products, who are not housebound, who do not REQUIRE chemical free food, water, clothing and all other materials in order to survive. Chemical free and organic versions of the same things cost a significant amout more IF and when they even exist.
From my monthly cheque, after paying for my organic foods, supplements, cats, utilities phone, cable and internet, there is nothing left over for safe clothing, entertainment, music, movies, books or anything else people take for granted. Just the bare essentials.
I do not go out, anywhere. I am completely housebound because the chemicals in laundry and other products can completely disable me, (besides, I have no clothes I can wear out of the house) so even the transportation costs to procure groceries are borne by others.
The rent of $51.06 a day ($1531.80 or $1582.86 a month) + 3% interest (as decided by the LTB) is not being paid and is accruing, but the landlord knows they can turf me out in April and then demolish the house (according to the OMB), so have not filed for another eviction process. How that money will ever be repaid, or what it will do to my future remains to be seen. Their offer to subsidize another place for me did not extend to subsidizing me here until a suitable place was found. They know I can’t afford it here.
3. I have only a few mostly tattered articles of clothing that are safe enough to wear.
I have almost totally worn out all my safe clothes (they were over 10 years old) and am now wearing a couple of tattered pieces along with a couple of other pieces that are just barely safe enough to wear but still give me some symptoms (burn my skin and feel like I am wearing a lead or cement suit that drags me underwater soon after putting them on ). These are summer clothes, and not warm enough for cold weather, even with heat. I have no safe slippers to warm my feet, and only one pair of somewhat safe socks.
Chemical free clothing is very rare and hard to come by, and then it is very expensive. Most of it also has to be shipped from across the border so has added costs from exchange rate, shipping and handling, customs fees, duty and taxes.
I have found some chemical free clothing online from Rawganique (not all their clothing says chemical free) but they are very expensive.
ODSP does not cover it. OHIP does not cover it. Goodwill does not sell it.
People have tried to send me used clothing, even from as far away as Hawaii, but as I am unable to use the soaps or detergents those have been washed with, some of which seem to become permanently embedded in the textiles, I haven’t been able to wear those.
Other people have tried to detox cheaper organic cotton clothing for me, but this still contains chemical finishes that have not been removed as well as tap water residues.
The only person I found who had a whole house water filtration system and didn’t use many of the products I cannot be exposed to, managed to safely wash an old (previously somewhat safe) set of sheets for me, and once washed a pair of pants and top that had been previously safe, almost safely, but after I had something spill all over them from a shattered glass during the cold here, when she rewashed them, she got soap residues that I do not tolerate into the clothes and was not able to remove them before she moved, so now those pants and top are also unwearable, possibly permanently.
At least it proved that with a decent water filtration system, and serious attention to detail (detoxing the machine first and not using anything other than the tiny amounts of borax, food grade hydrogen peroxide and baking soda that I am ok with) that there is a safe way to wash clothes for me.
4. Doing the Laundry.
I still need clean towels and sheets which cannot be washed by bottle. And the safest of available chemical free / chemical reduced new organic clothing still has manufacturing, shipping and handling residues, which can require at least a dozen washings to remove.
The laundry room here has been contaminated by mould since Christmas Eve 2008. I cannot go downstairs without having my legs go weak, and the mould causes congestion, severe depression and other brain issues. Also, just the shower filter like I had rigged up to the machine is no longer sufficient to filter the chemicals out of the water for me.
To be able to do laundry again, I need water filtration and a new portable machine. I can only handwash my little summer outfit with the heavy $12 glass bottles of spring water, and have only a thin summer robe to wear while I wait for them to line dry in the house. I wear these all at once just to keep warm enough, even with the heat on, so get cold. As a result of not having other clothes, I have to put dirty clothes back on after I bathe.
A heavy duty all metal portable washing machine can be used in the downstairs kitchen (which is now empty). There is an electrical outlet and a kitchen sink there. Here I only have one outlet in my kitchen, my fridge and an extension cord for small appliances and over the sink light are plugged into it. It’s too far away to plug a washer into.
There’s a washing machine that seems it could work if it could be cleaned*. There are a few cheaper models but they have plastic shells and don’t stand up to regular use, never mind heavy duty use required by someone with MCS/ES (repeated washes and rinses).
LG WT1485CW Portable Top Load Washer $750 Recommended Price
* Cleaning, to make it safe for me, someone would have to take it apart in a fragrance free environment, scrub it down to remove residues of manufacturing oils etc with safe for me cleaning materials, and cover the cord with washed down foil tape, and then put it through a few empty cycles to offgas residues from the motor before bringing it here.
5. Shopping.
I am housebound. I need people to shop for me. My 80+ yr old father took me when I could still go out, and did most of my shopping until recently, when he had to have an angioplasty procedure. I have 2 friends who help when they are able, but it isn’t enough.
My shopping involves:
– *Every Thursday afternoon going to the Dufferin Grove Organic Farmer’s Market. This is the only place I can get fresh produce that is not contaminated by store VOC’s.
– Every week going to a specific local health food store (HFS) in BWV where they accept my cheques and I know their stock (this store does not have scented soap or incense).
– About once a month going to an organic coffee shop on Roncesvales for 1 lb of coffee, and Global pets on Bloor W. every month or 2 for cat food and litter.
– Less frequent trips to the Big Carrot on the Danforth in the east end.
I do not qualify for any free helpers or homecare or shopping assistance from anywhere.
6. Canada Post.
Canada Post is sending packages back to senders because the rest of the block is boarded up and they couldn’t be bothered checking my address to see I am still here. Several packages and the mailing costs have have not been recovered.
I have been trying to resolve this, but as I cannot use the phone much and their email system is not very user friendly and accessible. My MP’s office would not help, and I have not been able to resolve the situation or receive a refund for the lost shipping costs, or to pay for the box of well water washed organic undies that is back in South Carolina after being shipped to me in September but returned to sender.
I need a refund of the lost postage fees, a guarantee that they will deliver here (or to someone else who can accept packages and pay for customs fees etc) and someone to pay by paypal to reship the box of organic undies I have waiting for me in the states.
7. Other
In early March, my LTB lawyer and I put together an appeal to ODSP and in April I appealed to the Social Benefits Tribunal, to ask that the amount I received for my daughter be reinstated on human rights grounds, to cover some of my additional expenses, as well as asking for additional funds to cover my current housing costs while here, until another place is found for me to live.
I hired another lawyer with the help of Legal Aid, and he said he needed more time to develop my case, so it was postponed from July until mid October. I almost froze to death waiting, and the lawyer ended up turning my human rights appeal into a charter appeal without advising me, when the Tribunal didn’t even have the authority to hear Charter Challenges.
So, somehow, the Tribunal event in mid October turned into a sideshow with ODSP claiming it had every right to deduct the funds since my daughter moved out, which of course they did, and nothing about the human rights grounds or the situation I was asking for additional money for.
Because they are refusing to provide medically required water filtration or assistance with medically required chemical free clothing (not simply organically grown), or any help towards medically required housing related needs, I am almost naked and homeless.
Not only that, but despite the Duty to Accommodate, my ODSP office refuses to communicate with me via email.
8. The Landlord’s Offer
In 2008, my landlord put an offer on the table which looked great, in theory. It was to purchase a house, remodel it to make it safe for me, and then rent it to me for $500 a month, utilities included. Wow! (So why won’t they subsidize me here, I wondered.)
The TOTAL budget for a new place including renovations was $200,000. This was ok because I need to be out of Toronto. Surely that would be enough, as it was double the previous amount someone had offered for the purchase of a house they could rent to me.
The biggest problem has been that (in addition to everything on MLS already being fluffed for sale with cheap and toxic materials, or that an occupied house is full of people’s chemically laden posessions making it impossible to tell if the house would be safe enough without them) that within the budget they’ve refused to pay for a qualified expert who could check any potential (pre-screened by phone or email) empty properties for me, decide if they were candidates for a safe remodel, and then oversee any remodel by people who were trained on how to do safe jobs for people with MCS.
Without such expert assistance, it is impossible for someone with severe MCS to be safely housed. Without paying for the work, and having the pay being dependent on factors outside the experts control, they set up a system that was guaranteed to fail, despite looking great on paper. No-one would work under those conditions.
UNTIL RECENTLY.
The expert I can count on has finally come on board willing to work with the difficult situation we have, and not go for the profit, bless his heart. He wants to put everything possible into the modification budget, so won’t do advance testing and screening for me, as that is expensive. We think that it might be necessary to gut and rebuild a lot of the house because of chemical contamination (a regular house to a person with severe MCS is like a meth lab is to a regular person- very dangerous)
Combing through MLS over the years has been an effort and a half for several people and numerous real estate agents. Agents do not need to ask questions about people’s chemical habits (what products, fragrances, pesticides, materials, etc they have used in the house) in order to make money, and make more money when the houses are cosmetically (and toxically) fluffed for sale.
Safe housing, while being the number one medical need for people with MCS/EHS, is nearly non-existent unless one can afford to build from the bottom up, and has help to find a chemically and energy safe area to do so.
We are running out of time now. There really isn’t enough time and money to make the kinds of changes needed to an ordinary house and have them off-gas. A safe enough house is almost non-existent, and how to find it without a whole team of people? What if something safe isn’t found? Who will appeal to the province and city to help me so I don’t land on the street?
Conclusion
It will take months to do the work on a place and allow even the safest of materials to off-gas inside the house so I can safely be in it, and we no longer have months. I have to be out of here in April 2010. I don’t have the resources now to go to the landlord tenant board (LTB) to ask for extension of time, and we’re not sure what the landlord would do anyway, if they will still purchase and remodel a place once the time has run out, so time is of the essence in locating a suitable place where I can also get outside to breathe the fresh air that is so vital to life.
The Ontario government, Ministers and my MPP have so far refused to provide ANY assistance for medically required safe housing I need, despite having the ability to do so.
I could die a completely preventable death if I don’t get the help I need.
Will you help?
A team of people is required to resolve this mess, a mess caused by the government’s refusal to do the right thing, to look after the medical needs of people with chemical injuries.
People with other health needs and disabilities receive assistance, why don’t we?
Many of these things should be funded by OHIP and ODSP, but they are not. Nor are there any other agencies who provide practical and appropriate support for people with MCS/ES.
I am a rarity that I can put my experiences into words, that I can write like this, that I have had a roof over my head since June 30, 2006, when we were supposed to vacate, that I have not died from some of the exposures the last few years that would have killed many of us (although I came far too close), and that I have not committed suicide.
ODSP has now started deducting money for gas heat and electricity directly from my cheque. This means that the money I was using to buy safe water is no longer available.
Since the summer, I was ordering 18-20 bottles every 2 weeks so that in addition to washing the pair of underwear and tank top that I am not wearing, that I could attempt to wash some warmer clothes to be safe enough when the cold weather came. That has been unsuccessful because repeatedly washing clothing bigger than a tshirt using bottled water is exhausting and too expensive.
I now need help to have safe water for drinking, cooking, and washing my one pair of socks and the underwear as often as people think I should have clean underwear to wear.
My outerwear, if you can call it that, is not being washed and has started to burn my skin and cause painful rashes because they are so dirty. The leggings and shirt have almost completely disintegrated. No-one should have to live like this in this country.
To avoid a near certain death and have a chance to recover, I need, ASAP:
Practical help
- As I am usually unable to use the phone for more than a couple of minutes a day, if that, I need someone who will make necessary phone calls on my behalf.
- Ideally I need a Dedicated Disability Advocate to co-ordinate everything:
- Assistance for shopping, make sure someone is available every week.
- Assistance to take out the green bin and garbage or recycling every week
- Assistance to shovel the steps to the front door for mailman and water delivery, a path to the side door where the bins are accessible to me, the plowcrete if the snowplows come, so that my food and water can be delivered to me, and minimally, enough snow from the driveway that a car could park there while someone delivered things to me, but preferrably the whole driveway so that my car could be used in case of an emergency.
Financial
- Funding for water filtration unit and installation.
- Funding for glass bottled spring water until whole house system is installed and fully functional.
- Safe clothing from Rawganique (or elsewhere if found), list provided on request.
- Portable washing machine, LG WT1485CW, thoroughly cleaned and cords and hoses covered with foil tape or someone with whole house water filtration who uses nothing but borax, baking soda, hydrogen peroxide for laundry to do my laundry for me.
- Discuss financial issues with ODSP office to ensure continued assistance from them
Housing
- Secure funding to contract the expert to make some modifications in current home to make it safer to live in for now, allowing me to recover some health for the move out of here.
- Contact head offices of Real Estate agencies and communicate to them what is being looked for, and request they assist finding suitable properties in landlord’s price range of $200,000.00, the price which also must include all necessary modifications and expert completion of such modifications, not just oversight.
- Comb listings/classifieds and make 1st calls regarding chemical evaluation (a questionnaire is available that lists a lot of the things we need to consider).
- Take initial calls from agents or landlords to screen for suitability, with me doing the final step in giving approval.
- Once suitability potential is determined, have qualified expert evaluate the home for chemicals, moulds, wiring issues, and other environmental safety factors.
- If place passes initial inspection, arrange for me to visit proposed residence.
- If suitable, help plan necessary modifications, with RS as chief supervisor of project, and oversight regarding cleaning, preparation, purchasing, offgassing and installation of safe equipment for water filtration, heating, laundry, and kitchen appliances. More funding may be required for safest appliances.
- Call moving companies to find safe truck and movers. No pesticide residues, chemical cleaners, or “air-fresheners” in truck. Movers must be non-smokers without fabric softener, scented detergents, aftershave, cologne, or soap residues.
- People to assist me on moving day to relocate her and possessions into new home and help with basic set up.
- Someone to locate assistance in new area, and to shop for my needs for a period of 2-6 months after moving, until my health returns to the point I can be independent again.
Or, if the purchase plan with the landlord fails:
- Secure a sufficient rental subsidy guarantee from government if suitable place is to be found without current landlord co-operation.
- Search for other means necessary to aquire and prepare appropriate medically required housing.
- Make sure the preparations are appropriate.
- Research all the issues required to make a safe move as noted in the purchase plan above.
Summary
To review, the Ontario Disability Support Program does not cover the actual cost of rent, heat and hot water, spring water or filtered water system necessary for my drinking, eating, bathing or laundry, chemical-free clothing, and all-organic food and supplements required to sustain my life.
ODSP and OHIP do not provide chemical-free healthcare or housing, which are among my primary medical needs. In short, no agency exists to provide any practical support for someone with my disabilities. These shortfalls must be addressed to ensure my health, safety and welfare.
Ultimately, everyone disabled by MCS/ES/EHS should receive the support required to live in this society without having to endure constant and unnecessary suffering. Anyone capable of political action on these issues is greatly appreciated.
Linda Sepp
January 2010
Seriously "Sensitive" to Pollution 