ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Promoting the accommodation needs of people with ME/CFS and MCS
Thursday 4 October 2007
We advertised on 28 September a coming forum [here] on housing for people with special needs.
We’ve since liaised with the organisers about the need for the venue to be safe and for the housing needs of people with chemical sensitivities to get onto State Government’s agenda. We’ve had a positive response.
Here is correspondence between Peter Cahalan, President of ME/CFS Australia (SA) Inc and Wendy Hackel of Housing SA about the suitability of the Mercure Grosvenor Hotel Adelaide as the forum’s venue.
You’ll note that Wendy has indicated that Chris Halsey, chair of the Minister’s Strategic Housing Advisory Committee, is willing to meet a delegation to discuss the special needs of chemically sensitive people. If you’re in this category – please, we’d urgently like to hear from you what your specific accommodation issues are. Not a long document, please – just a summary of the key issues which make it hard for you to find safe and accessible housing. Send it to firstname.lastname@example.org.
Now read on…
Tuesday 2 October 2007
I’m sending on to you some internal correspondence between members of the ME/CFS Society (for people with chronic fatigue syndrome). We have promoted your housing forum on our website (which is heavily used with around 450 visitors a day and 1.5m hits a year). It’s third item down on the site – www.sacfs.asn.au – as I write.
I copied in Peter Evans who is one of our members and, with me, a member of the government’s interagency reference group on Multiple Chemical Sensitivity. (Maurice Corcoran represents DFC on it.) You will note that Peter is critical of the venue arrangements and other matters relating to the previous such forum.
I can verify that, regrettably, the disability sector as a whole still has a low level of understanding of the needs of people with chemical sensitivities. My own daughter, representing the Society’s youth wing, had to leave a disability forum at the Adelaide Hilton some years back because of cigarette smoke drifting in from doors left open to the balcony and because of residual smoke on the clothes of the smokers. I’ve myself attended the first ever disability tourism national conference in Perth three years ago and found that the guys in wheelchairs were pretty much oblivious to what they were doing as they took a fag right by the entrance doors.
We are increasingly controlling cigarette smoke as an access issue for the chemically sensitive. But there are numerous other problems with venues still to be addressed: air fresheners, carpeting impregnated with cleaning agents, fragranced handwashes and so forth.
Fundamentally, this part of the disability sector has complex needs which are about as well understood now as were those of the mobility impaired in the late 1970s (when I started my own career in the public sector developing venues and started meeting advocates such as Richard Llewellyn and Richard Heath).
I would hope that we get one or two members of our Society along to the meeting and that we can get them there without them confronting the problems which Peter Evans has alerted us to. The two things that stand out from my experience over recent years with MCS people are:
1. Their problems safely accessing hospital treatment;
2. Their desperate need to gain access to non-toxic accommodation in areas where their neighbours aren’t going to poison them with pesticides, herbicides, toxic paints, cigarette smoke and the rest.
I hope that their needs – largely off the public housing agenda at the moment – can be raised at this forum. Hence I’ve sent this to you and would be glad to know if DFC/Shelter SA will take every step possible to make the forum safe and accessible.
I’ll be happy to publish any reply on our website if you’re happy for us to do so. Thanks Wendy. I hope there’s a good roll-up at the forum.
Wednesday 3 October 2007
I’ve contacted the hotel to discuss with them their use of chemicals and fragrances and they have assured me that the entire hotel is smoke-free. Where possible they use environmentally friendly and natural cleaning products; and those they do use for cleaning are herb-based. The only fragrances are in the bathrooms. However the disabled bathroom does not use automatic fragrances.
The aim of this Information Forum is to provide the non-government sector with information about the housing reforms that have taken place within theDepartment for Families and Communities; the impact of these reforms on service delivery and the implications for non-government agencies in their dealings with the Department.
The Chair of MSHAC, Chris Halsey, to whom I referred your e-mail, is very happy to meet with you to discuss the concerns of the Multiple Chemical Sensitivity reference group in relation to housing services, if that would be helpful.
Wednesday 3 October 2007
We’ll pass the word on to our members. In fact it’d be easiest and most effective for me to post this chain of emails on our website. We’re running a campaign to alert them to the range of ways in which they can become more politically active. Would you be happy for me to do so given that it’s actually a good example of positive interaction between a government agency and the Society?
It would be terrific if a small contingent of us could meet Chris Halsey. I am not sure we could validly do so as representatives of the interagency reference group on MCS. But I could raise the issue with the committee and see if it wishes to formalise the interaction or simply leave it as a separate discussion between the community representatives and Chris.
Thanks again Wendy. Let me know if I can post it on the website.
Thursday 4 October 2007
I have no objection to you posting the chain of emails on your website, thank you. And I’ll wait to hear from you regarding meeting with Chris Halsey, the chair of MSHAC.