Patience

Today I called Access Ability. I don't know anything about the service, but the disability people said I needed an assessment to see what sort of things we're going to have to think of with me & here at home, to make life manageable. So I called. I left a message for the nice voice on the answer phone since she wasn't there.That all seemed to go pretty normally.

A little while later I got a call back:

"Hi this is ***** from Access Ability".

"Oh hi *****".

*waits for a clue - like "how can I help you" - anything*.....um, I'm calling to arrange an assessment....". 

"Are you a client of ours?" 

*thinks - I've joined so many things, did I join this?* "No, I don't think I am". 

"Is it you who is disabled or are you calling for someone else?". 

*Oh, I know the answer to this one!* "Me, I'm disabled" *Oh my God. I'm disabled. How weird does that sound?*.

"There is a process to go through".

"Okay, I just rang because the disability people told me I should call you".

"There is a process to go through - what is your disability?".

*That was officious - what did I do wrong?* "I have two. Spondyloarthropathy & Hypermobile Joint Syndrome".

"There is a process to go through [yes, I got that impression, I'm beginning to wonder what it is...], you'll need a letter from your doctor saying what your disability is before you can access our service".

Okay...I have to prove it. That all seems fair. I figured that would be part of a form filling out thing anyway...except I hadn't really thought that far ahead, because I still don't know exactly what it is Access Ability do apart from give assessments.

"I'll send you out some forms to fill in - you'll have to provide some paperwork from your doctor saying what your disability is"

*ok, so I get it, I really have to prove it....wonders how many people spend their days calling up agencies pretending to be disabled just so they can ask for an assessment* 

"What's your address"

*gives address*

"I'll send you the forms, you fill them out & send them back".

"I hope your day improves for you". Yes I am just enough of a bitch to say it. 

"My day is great, thank you".

Good for you. I'm so sorry for the people who have to talk to you today. If they're ringing you to ask for help, then it's not such a good day. They've just discovered their lives are not what they thought they were going to be, that they need help to manage day to day. Their world has been turned upside down. They are lost and confused. They have no clue what they need. They don't know who you are, or why they need to call you. They don't understand why you are being so rude. There is a way you treat people with a disability: it's called the same way you treat everyone else.

Anyone with a basic understanding of disability is aware of the experience of powerlessness that being disabled can create. Why on earth would you treat someone like this?

As for being "a client" - if you were a store I would not shop there. I would go somewhere else. If I had any choice whatsoever in the matter I would not use your service I would choose another.

For the record, I worked in mental health support for 4 years, was on the phones at Lifeline for 5 years. I assisted with the Total Mobility Scheme at my regional council, answering the phone to people who "wanted an assessment". I can do this woman's job with my disabilities, standing on my head. If she dislikes it as much as it sounded over the phone. I will be very happy to have it. It would be an absolute walk in the park for me & and an absolute pleasure besides.

Access Ability, if you have a think & decide you'd like a new receptionist - may I apply for the job? Your clients will be so well looked after & absolutely delighted with their contact. They definitely will not be a puddle of tears after making the call, unless it's because finally they spoke to someone who was kind.

1st NZ report on implementing the UN Convention on the Rights of Persons with Disabilities

Over the end of 2010 submissions were called for New Zealand's report on implementing the UN Convention on the Rights of Persons with Disabilities.

In response submissions were made including requests for awareness raising, education for health professionals & the issues surrounding lack of access to health services for people with MCS in New Zealand.

The first report has just been released, and article eight, section 36 responds to the issue of lack of awareness surrounding the issue of awareness in disabilities such as multiple chemical sensitivity:

36. Awareness and understanding of different impairment types by government agencies, professionals and the public varies. Disabled people with uncommon impairments such as those arising from multiple chemical sensitivity syndrome report that there are few or no services available (to respond to severe reactions to chemicals) and health professionals lack knowledge about such conditions.

See link to full report

I am delighted to see that there has been acknowledgement of the lack of services available to people with MCS & in this first report a committment to raising awareness among health professionals.

Medic Alert

My Medic Alert bracelet must be broken. Not once has it alerted me to an approaching medic.

When I put it on it feels like it ought to create some sort of "invincibility shield". But it doesn't. Or at least it hasn't yet.

Next time I update mine I think that as well as listing "allergies" & "conditions" I will include a "wish list" of superpowers. Like "being able to stay upright for 15+ minutes!", and "walking short distances unaided!". Next time I fill in a form for Medic Alert I want to be able to add "Gluten, soy and dairy tolerant!"

That way if any medics sneak up on me (in the event that the new "alert" bracelet doesn't sound the alarm) they will know to administer vast amounts of chocolate cake. Stat!

Hospital guidelines (2)

Today I received this letter:

Dear...

Thank you for your email of 1 November 2010 to the Minister for Health, the Hon Daniel Andrews MP requesting follow up information on the distribution of the Multiple Chemical Sensitivities Guidelines for Hospitals in Victoria.

In accordance with the convention that the Government assumes a caretaker role during an election period the Minister has asked me to reply on his behalf.

I am pleased to advise that the South Australian health department has given permission for these guidelines to be used in Victoria.

Once these guidelines are adopted for use in Victoria they will be distributed widely to all public health service providers. It is anticipated that guideline distribution will take place in January 2011.

Yours sincerely
Lance Wallace
Executive Director
Hospital & Health Service Performance

For earlier correspondence refer to: Guidelines for hospitals.
See the current South Australian MCS Hospital Guidelines here 

August 2011 update: Success! Multiple chemical sensitivity: A guide for Victorian hospitals
I heard through ME/CFS Victoria that some other members were also approaching the Victorian government on this topic - it's brilliant to see the hard work that has been put in (it's no mean feat writing the shortest polite request to a member of parliament when you have ME/CFS, not to mention the research). I don't know who the other people are who were making the request as well, but I'm so thrilled that the government have acted on our requests.

Thank you DDA

I'm so pleased this country has a Disability Discrimination Act. Once this was pointed out to the clinic mentioned in my last blog, the second letter I received was significantly more accommodating. I didn't expect as much as they offered. But am very happy. I am about as protected as I could have hoped from the chemicals that were making me sick, while still visiting a public place.

1. I have a separate room to wait in away from the general populace - it is well ventilated & I can sit outside on the veranda
2. The clinic I now attend has better ventilation & I can still see my own GP
3. I can leave straight after & pay by phone & not wait at perfumed reception to pay
4. The air perfume dispenser will be removed from one toilet

Well done to them for coming through.

Re: Air Fresheners

We have reviewed your requests re air fresheners and perfumes.

Our clinic is designed to provide the best experience for the majority of our patients and as such we will not be making any changes.

Yours sincerely...