About lauredhel

Lauredhel is an Australian woman with a disability.

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Activism suggestion: How about shade for “accessible” parking spots?

How do we start campaigning for shade over accessible parking spots?

Parked cars in the Australian sun get way too hot at the best of times, no matter how able-bodied you are. But lots of people with disabilities have further issues with temperature regulation and/or high temperatures making them sick. People with spinal injuries can have major issues keeping their body temperature stable. People with multiple sclerosis can be made very ill very suddenly by overheating. People with CFS or fibro can have similar issues with temperature regulation or overheating. Head injuries or Parkinson’s disease or stroke or diabetes or lung cancer or extensive burns scars or who take certain medications can all reduce a person’s ability to stay safe in the heat.

Assembling a scooter exposed to the baking sun in a car park is no fun at all. People in body casts or braces can’t dress down effectively for the heat. You can probably name more. This isn’t a tiny or ‘niche’ issue. This affects a lot of us.

Putting simple shadecloth or tin roofs or established-tree shades over accessible parking would be simple and inexpensive, especially given how few spots there actually are. But I regularly see lots of tree shade over the non-accessible spots, with the “accessible” spots out in the baking sun.

I expect this is almost entirely because of ignorance. How do we start getting the word out?

By 17 October, 2009.    accessibility   

It’s…. Chatterday!

We’ve decided to have a weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy. About the only content-related rule is to keep this thread for things not covered in other threads over the past few weeks.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world?

Today’s chatterday backcloth comes via Zooborns (you might expect a lot of that). This rare okapi calf was born at Lowry Park Zoo in Florida.

baby okapi, mother licking the top of its head

By 16 October, 2009.    chatterday   

BADD: The radical notion that people with disabilities are people, and Australia’s 2020 Summit

[This post was originally written for BADD – Blogging Against Disablism Day, and posted on May 1, 2008 at Hoyden About Town. The 2020 Summit was an attempt by the then-new Rudd government to brainstorm ideas for the country’s direction in areas including the economy, health, social inclusion, sustainability, the arts, and so on.]


This post is a part of Blogging Against Disablism Day.

For most people, health is not life’s goal. Public health is not a religion, or, as recently seen in the United States of America, health is a journey, not a destination. Health is a means to an end, it is a resource for living the full life, not something to be pursued in an obsessive way that denies risk enjoyment and testing limits.

[John R Ashton and Lowell Levin, “Beware of Healthism”]

How many people with disabilities participated in Australia’s 2020 Summit?

According to the Australian Bureau of Statistics, 19% of the young (aged 5-64) population have disabilities, and numbers are much higher after retirement age. If people with disabilities (PWD) are considered full citizens and had proportional representation at the Summit, of 1000 working-age participants, you might expect nearly two hundred people with disabilities having their say at the Summit.

Of people with disclosed or visible disabilities, however, the current count seems to stand at less than ten. According to one source, there were six. The fact that these numbers are difficult to obtain shows how important this issue is in the able-bodied national psyche.

On this information, that’s PWD underrepresented by a factor of thirty. How many protests would there be if there had been only 16 women at the Summit? The country scrutinised gender inclusion closely and at length, both in the mainstream media and in the blogosphere. This disablist inequality puts that to shame.

You can download the Initial Report of the Australia 2020 Summit here.

The report opens with “The Productivity Agenda”. The focus on a competition economy labels us as marginal citizens, if we are not economically useful. We are primarily a problem for capitalism, a burden to be reluctantly dealt with. We are not seen as people with thoughts and ideas and lives, people who have their own perspectives and contributions to Australia’s civic society and cultural life.

Read more: BADD: The radical notion that people with disabilities are people, and Australia’s 2020 Summit

Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

[This post was originally posted at Hoyden About Town on April 27, 2009.]

There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.


Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

Read more: Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

On ambient intimacy and assistive devices

[This post was originally posted at Hoyden About Town on January 27, 2009.]

I was having a discussion about ambient intimacy in a couple of elsewheres, where I tried (and possibly failed) to say that what is so reviled by opinion editors and other meatsnobs can be useful in all sorts of ways.

I like the little slices of life on my friends’ livejournals, however trivial, because I just can’t access this sort of chatter in my meatspace. Yes, I want to know how your daughter went on the first day of school, that you cooked a delicious recipe for dinner, that the eggplants are flowering, how your doctor visit was, what you thought of Big Love last night, that work is pissing you off, where you spent election day, or that the storm didn’t blow your roof off.

The internet is the virtual watercooler (or coffeehouse, or playgroup, or pub) for people like me, isolated due to disability. And I’m fed up with able-bodied folk slamming electronic community as a meaningless half-life. I’m sick of internet use being constructed as a signifier of a person as a pathetic loser worthy of mockery. And I’m over ignorant pundits reviling the rise in electronic community as The End of the World as We Know It, a one-way highway to the inevitable disengaged, apolitical fragmentation of society.

I think there might be an analogy to be drawn here with physical assistive devices. People who use wheelchairs, for example, use wheelchairs. They get around in them. Wheelchairs are useful, value-neutral objects. People are not “bound” to them; they’re not “condemned” to life in a wheelchair. The use of a wheelchair doesn’t mark a person as either a sinister or pitiable caricature. And above all, people are not synonymous with their wheelchairs. They’re people who use a mobility device, a tool.

The internet may be many things, but it is also my social assistive device. And that’s not tragic, or threatening, or worthy of scorn. It just is.

Stop and think: invisible access for invisible disabilities

[This post was originally posted at Hoyden About Town on May 4, 2007.]

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense!Read more: Stop and think: invisible access for invisible disabilities

Telegram to TABs, on Spoon Theory

Message to TABs (Temporarily ABled[1] folk):

Spoon Theory?

It’s not yours.

It doesn’t describe the sleepy feeling you get at the end of a long day, nor the feeling you get when your kid wakes up for the third time in a night, nor the feeling you get because you went for a bike ride yesterday or are pulling shiftwork right now or feel like a weekend nap or stayed up late last night reading a book or whatever else is going on in your life.

It’s a word for people with disabilities, an oppressed group, to describe our lived experience, which is not the same as yours. Our oppressors taking our language is not ok.

Many of us know what not having a chronic illness feels like, including not-having-a-chronic-illness while parenting or exercising or pulling shiftwork, and it is nothing like this. Ordinary done-a-bit-much tiredness has nothing in common with the experience of people with genuinely limited spoons (and typically a whole other bunch of symptoms), and who are going to feel the same every single day for the foreseeable future. No.Thing.

Your co-opting of this term is NOT OK with me.


[1] I know that “temporarily able-bodied” is a problematic term, though in this post I am speaking mostly specifically of chronic illnesses like CFS, fibromyalgia, lupus, and so on. Do people have the same problem with Temporarily-ABled? I’m willing to change the language.

Cross-posted to Hoyden About Town

By 10 October, 2009.    language   

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