Tag: choice

identity matters

This is a good post about identification as a person with a disability, for a women with a mental health issue.

It brings up some interesting thoughts for me about “what actually is disability?” That’s medical vs social model stuff, but its not just that. Its about the labels we as people with impairments use to define and describe ourselves. What boxes we put ourselves in and how easily or not we communicate with those in the other boxes of disability.

I find myself now straddling two of those boxes more often these days. So now the whole question is “to tell or not to tell” is a live question where before I did not really understand it; except as I defended theoretically an individuals right to non-disclosure. I could not understand, untill recently how people could choose not to “give details” and yet still want to use the political, social and practical elements that come with the tag. i fought for the right to non-disclosure  because it is an option and I’m all for individual choice. I have many friends with non-aparent and often non disclosed disabilities whose choice I respected. As is often the case though it is not until one is given the choice that one is aware one has a choice….

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values added

Interesting take on “assisted suicide” as a care prevention option.

This couple were apparently in good health but precisely because they were in good health now was the time of their choosing;

“Mr and Mrs Milner’s daughter Chrissy said her parents had been in good health but did not want to get to a stage where they would be too ill to care for themselves. She said they felt they had to pre-empt any possible serious deterioration in their health.”

And this from the letter signed by both Mr and Mrs Milner;

“I have made many visits to friends and relatives in care homes. They cannot wash, dress, feed or toilet themselves. They cannot get out of the chair or walk. This can go on for a long time – years.

Long before we reach this stage of degeneration the quality of life for us would be unacceptable, cruel and inhumane.”

This is probably the main area of public commentary and thought where I come over as, dare I suggest, my most conservative. My biggest issue is the Milners objection to living a less than perfect life.The danger seems to be in leaving people with the impression that unless everything is just the way it always was, or the way you want it  life is “not good enough” to live. That may or may not be appropriate for the Milners’ or the late Christopher Reeves who made similar comments following his injury. But as  someone who occasionally needs help with all the things that letter listed, I’d like to think I contribute and have added value even at those times my health was at a low point and I needed to adapt.

Advocates of this position have told me that it isn’t personal: that they make no judgement about those of us who choose to live and hopefully contribute in spite of our challenges. They often heroise us; collectively for living.

If I had a dollar for every time someone told me they couldn’t live with my disability…. And there have been times when I thought they were right.

Each person will make their own decisions about end of life. I have no issue with the decision they have taken. I take issue with the publicity they sought by seeking to have the letter published.

He said his first letter was published 60 years ago and asked that this, his last letter, would also be published.

My quams are about the social responsibility of turning your choice into a headline and the impact that has on the rest of us

At the point that you write to the newspaper, or post to a blog claiming that you want to get out while you’re ahead  you add to the debate and the value of choice that you advocate is compromised. You are in a position to place value and the associated judgment on all life, not just your own. On the recent paraplegic who is trying to piece it together on his way to physiotherapy; on the teenager whose parents have just divorced for whom just the way it was seems a long way away. Either of these folks could be flicking through the paper and read your assertions about maintaining control and “the good life”

Inclusion of the rest of us who just get on with it also gets much harder. The fact is none of us know what we will be capable of till we are there. To publisize a decision like this either way makes it harder for the rest of us to make our own choices.

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disability access is like organic fruit

Not that long ago, the origin of the fruit and veggies in our supermarkets was a lot less important to the general populous than it is now. Barring the scandals of oil spills and contamination reports we supermarket shoppers were largely content to believe that the fruit and vegetables that were being presented to us aisle after aisle were the best that the growers and producers could provide us with. We believed quite rightly in most cases that the produce was good for us.

There was however a small group of consumers who sought a better way, they were concerned that the pesticides being used on the fruit and vegetables found in our supermarkets might or did cause harm. They sought out organic fruit and vegetables” claiming that at least for them these products were better. These brave individuals were prepared to make choices, difficult choices at times about what they bought, from where and indeed how much they paid. They were prepared to make sacrifices to ensure that they got the products they needed. They spread the word.

Slowly one or two became a few more. Friends cooking for these organic sensitive individuals started choosing organic too and finding it better for them as well. As a result,  behaviours were changed with people being prepared to make the choice, pay the price and look a little harder for the right products. These friends may have initially made these sacrifices out of altruism but eventually “switched” out of interest for themselves and their families and the word spread.

As the word spread demand rose and broadened from the eco-conscious hippies or allergy prone individuals to a more mainstream audience. The economics of supply and demand resulted in a price drop and more suppliers. The early adopters and those that made choices to include them were rewarded with more change left in their pockets as producers scrambled to change their practices and their image to maintain a market share in this new “conscious” economy.

Now we have reached a point were producers, marketers and suppliers of more than just our fruit and veggies clamor to convince us; the everyday consumer of the ecological sensitivity of their products. Everything from toilet paper to coffee, department stores and shopping bags, to cans of tuna labeling everywhere strives to convince us that it too is conscious of the planet, good for us as well as being good for the bottom line. We walk  into the supermarket more aware of our environmental footprint and the calorie count and preservative level of the products we buy as we walk up and down the aisles. We walk out of the supermarket or department store a little more aware of not just the change in our pocket but the change to our bodies and the footprint we leave. We leave the supermarket determined to recycle the plastic bags we are carrying  or with an armful of green bags determined to reuse them again and again.

This is all great and important progress to not only our health and longevity but also the health and longevity of the planet. It didn’t start with legislation. It started with people. Not just the few who needed the organic vegetables, fruit or low allergen soap, but with those who cared for them. Supply only increased when it was more than just those in the immediate circle of those most affected who were demanding it. Not just with their voices. Also in a much more telling gesture, they told us all with their wallets. As a result they, and we are better off.

It might still be easier to grow with pesticides but its not enough for us anymore

Within the disability sector here in Australia we have waited 10 years for the much  anticipated Disability (Access to Premises – Buildings) Standards. The intention of these Standards was to bring the various bits of paper (the Australian Standards for Access and Mobility, the various building codes and the Disability Discrimination Act) into alignment saving the confusion that might have prevented some of the intended implementation. Clearly a step in the right direction will be made with the adoption of these Standards, although when and how much is a question as well. With an aging population who are used to being included and involved I wonder if these steps will be enough to manage the current demand, much less anticipate future demand.

So what of the connection between organic vegetables and the provision of access?  They are both about sustainability. They both need to be a matter of broad public interest, opinion and action before any significant change will occur. A range of people need to choose differently and with their wallets. Once it becomes a matter of money in the banks, businesses will see the value in changing the access to their building.

As several of my high school teachers pointed out legislation must move slower than public opinion to prevent knee-jerk laws and a less stable judiciary. That makes sense. The aging of an active population is however not a question of public opinion. Nor is the intention to provide inclusion and equity a new concept, or a newly embraced one. They are both well recognised, well researched and established understandings.

My friends often have difficulty finding venues to have events they want me at. The assumption that in 2009 no one is allowed to build an inaccessible building or run a discriminatory service is soon dispelled. Unfortunately; as well as being rare, the accessible venues also tend to be the more expensive and more sterile options because it is the larger organisations that are under greater pressure to provide access.

Even when a level of access is said to be provided, equity, independence and dignity may still be unavailable in any of several given moments.  A platform lift that may or may not work and requires the cooperation of another simply because they have the key they use to prevent vandalism or independent use (ironic given the intention of the lift). A single step requiring help every time. Having to seek out a manager — usually male —  to get access to the locked accessible toilet. Waiting an hour for a services that others wait 15 minutes for, like a bus ride. This stuff is all common and recent. Its all roughly bearable too. The experience is also better than it was 15 years ago. But its not equitable either. It’s not as it was intended, and it is still hard.

Change is happening and that is great. The Standards are going to come into effect, and people are understanding the dilemmas and the issues, and are generally more conscious if not more responsive. But without the commercial impetus the changes needed will not come fast enough. It may indeed be too easy for small businesses, schools and other organisations to get granted an exemption to the requirement to provide access. Perhaps though it is also too easy for them to want it. There are very few reasons to want to provide access.

Like with the organic fruit, this is going to take a few brave souls who have no obvious need for ramps, rails, AusLan or Easy English to make some of  their lifestyle choices on the basis of these things, and joining those of us who have to make those choices in rewarding those businesses that do provide access and equity with a little commercial stimulus. We also need to say why we are making the choices, both to show the old businesses we used that there is a cost and the new choice that we make that there is indeed a reward for equity. This may cost us a little more initially but when whole parties get moved because of a single step  businesses will slowly seek out venues that will work for them too and once again legislation will follow demand and we will be ready for those active baby boomers.

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This is really sad. Scary too on a number of levels. Personally and globally. But I’m torn. I think.

At one level, I have some small sympathy for the parents. It must be hard to see your child, help her, know her as your own, but otherwise be unable to engage with her at a meaningful level save for smiles and such. There may be an element of the protective there. Certainly a read of the anonymous entry by her parents would suggest as much.

But I can’t help being scared. This is a bigger picture issue which I will think more on. Designing a girl’s life so young based on what others think will be comfortable is problematic largely because the timing sounds like a convenience thing even if the intention was not. (more…)

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