Life’s Little T-Intersection

We are moving in less than a week.  Moving house.  Moving town.  Moving school.

And losing about 80% of our stuff.  Not that we had a lot of clutter per se, or even a large house, but the place we are moving to is SO small, that we can barely take even basic furniture.  Our desks for instance, have to be left behind.  My husband will have a bedside table but I will not.  The kids need bunk beds again.

The good part about moving (and the reason for it) is that we will be closer to things, and those things are disability accessible.  It will not matter what classroom my kids are in at school, as the whole school is accessible.  The local area is flat with lots of footpaths.  We will also have access to a pool (essential therapy for the kids and I).  Actually, our unit (tiny though it is) overlooks one of the two pools at the complex we are moving to.

We are starting a new life in 2014.  No more staying inside at home for weeks at a time.  And much more exercise and healthy living.

I can’t wait to start my new life.  Ehlers Danlos Syndrome may have my body, but it doesn’t have my soul just yet.  And maybe I can reclaim part of my body back too!

Life however, is not just about the physical.  The t-intersection I face comes in the form of “what do I want to achieve outside of the personal?”

First though, some background.  A story about Dick and Jane.  Both are high profile disability advocates, though each works separately.  Dick is currently “speaking for people with a disability” and he should know right?  He has a disability.  He is in a wheelchair.  Yet…  he is demonising people with a disability every time he opens his mouth of late.  He speaks as though only those people with a disability who are capable of working, are worthy of governmental help and consideration.  He has gone so far as to suggest that policies and plans should only focus on these “employed, or able to be employed” people with a disability.

Fuck the rest of us.  We don’t matter.

Jane on the other hand, is so busy big-noting herself that she doesn’t have the time or inclination to bother learning about other people with a disability before she opens her mouth.  Nor does she make any exception for them.  I speak a lot about disability sure, however I try to always remember to qualify my statements with “this is about me – I can’t speak for others for whom the situation may be different” type disclaimers.  I have never seen evidence of this from Jane.  Jane used to bug me more than she does now, but I read a blog/article the other day which spoke of such people in terms that clicked for me – big-noters.  I had trouble trying to process how Jane fit into disability advocacy because she doesn’t – she fits into “this is about me” and “inspiration porn” advocacy.  Which would be cool with me, if she didn’t attack other people with a disability, both inadvertently publicly, and outright on the side, while she was doing it.

Aside from an exception for politicians or flat out arseholes, I hate speaking badly of people.  I really really do.  These two people are not bad – just misguided in my humble opinion.  And while I am entitled to my opinion, I certainly shouldn’t judge them per se.  For sure, they are doing more “about” the disability cause than I do, or probably ever will (I can’t bring myself to say “for” at this point in time).  They are out there, doing their thing.  I am stuck here, wasting away.  If it wasn’t for the fact that my wastage is involuntary, their own morality and ethics would piss all over mine, even if they are misguided.

However, my wastage at this point in time IS involuntary and I believe they are both hurting the cause at large rather than helping it.  I have no desire (or chance) of fighting them, however I do believe there could be a way to steer the conversations they start back to where they should be – for the greater good of ALL people with a disability.

The bad news is… I suck.  I truly do suck at this stuff.  I’m good with seeing current social patterns, and predicting social futures etc, but when it comes to the personal social aspect of this type of advocacy – I suck.  I speak my mind when I should keep my mouth shut.  I get “overly” emotional and refuse to apologise for it.  Hell, even this very post is going to cop some flak when it is done, even though in my mind, I am just speaking my truth, and I believe I have every right to do so.

I am so sick of feeling like shit every time I read something about disability in the last few weeks.  As if the government ripping the crap out of the few supports we have left isn’t bad enough, I also have advocates who should know better, telling the world that people like me are worthless because we can’t work, or that people like me “choose” to stay at home and “feel sorry for ourselves”.  I hate the hypocrisy of the Australian people who think we can’t afford physiotherapy through the NDIS for people with disabilities, but would complain rather loudly if they couldn’t get physiotherapy after an injury.  But I especially hate the hatred of “my kind of disability” by those who ALSO have a disability.  They have power, and they are standing next to the rest of the able bodied world and agreeing with them that unless we are employed, or “get out of the house and contribute in some way”, then we are not worthy of a god damn thing.

And that is bullshit.  I have worth as a wife, mother, friend, neighbour, volunteer, and consumer.  I have worth from the fact that once I did pay my taxes, and maybe in the future I could do so again.  I have worth because I married a carer who works for $300 a week rather than live at a home that would cost much much much more to the Australian tax paying public.  A husband who, by the way, has also paid his share of taxes over the years.  A husband who is choosing to live below the poverty line, and raise his kids below the poverty line, when he could move without me and earn a fortune, because he’s just a nice guy!!!

Even those who are not like I – who are solely reliant on the tax-payer and always will be – have their worth simply because they are human.  Given the right support, there is a range of ways people with all kinds of disabilities can contribute to society through not only employment, but art and philosophy and the like.  Not only that, but the existence of people with a disability who seem to contribute nothing, means jobs for others who have to care for them.  Their existence means jobs in health care, and disability services.  They contribute, even if you personally can not physically see it or conceive of it.  Imagine how much MORE they could contribute if they were also given the right health care and support to do so, instead of left to die a slow and lonely death in their homes.

The other day, I read a comment that people with a genuine disability (as opposed to the other fake kind I guess?), should certainly be given enough to put a roof over their head and “basic” food.  Yes, “basic” food.  The commenter went on to say that the tax payer should not be expected however, to fork out for things such as cigarettes and alcohol.  Apparently it is fine for people with a disability to exist, but not to LIVE.  And they need to live by the rules of their oppressors, rather than make up their own, a freedom that is granted to every able bodied human in this country.

It is this attitude that treats us as subhuman.  It is this attitude that loves people like Dick and Jane, who confirm their belief that people with a disability are only worth something if they have the ability to contribute in terms set not only BY, but FOR, able bodied people.

It is this attitude that I want to fight.

But I suck at it.

So my dilemma is this – do I try anyway?  Do I give it a good hard go, and come what may?  Or do I shut up, put up, and just try to live my new life as best I can?

2013 sucked the big one, in so many ways I can not describe them all.  I want 2014 to rock.  I want to be happy.  I want to live my life.

I also want to fight.  I want to meet people and discuss ideas and make a difference.  I want to take a chance and see what happens.

So I guess the question is – which do I want more?  Am I willing to risk my good year, or even my good life?  Can I figure out a way to have both???  Am I prepared to end up with neither?????

I do not know.


Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Disability, Personal
4 comments on “Life’s Little T-Intersection
  1. Your remark about people living with a disability being expected to live by the rules of their oppressors is an astute and poignant observation. That really spoke to me. I don’t think you ‘suck at it’, quite the opposite. I think your observations are spot on. Your voice speaks to those who feel disenfranchised by the louder voices of those promulgating a downright functionalist ideology that minimises other people’s lived experience. I appreciate the dilemma you are faced with. Maybe in time, after the move and as you settle in to your new circumstances, you’ll find the clarity you seek.

  2. addercatter says:

    I don’t think fighting will ruin your good year. Even if it doesn’t go as you hope, you are still making a difference if you are raising awareness and that is really something to be proud of. What we do today may not have an effect even in our own lifetime, but as long as we are fighting for what we believe in, we are contributing to future change 🙂

  3. I also have EDS and do not get any governmental support at this time. As with you, I married my caregiver – and he too chooses to live a life riddled with worries about MONEY and HEALTH.

    Last year we unpacked our 3 bed 2 bath condo and moved into an RV. Letting go of things feels hard and it may create some moments or even entire days of anxiety, but placing yourself in reach of what you need in a situation where you can physical get around is brilliant!

    I wish you the best of luck with moving and the new life ahead!

    • Thanks for your comment 🙂 We have been here two days now, and I still can’t believe we are here for good (as opposed to a holiday) despite all the moving and unpacking etc. Once my pain levels go down a bit, I know I am going to love it here! It was definitely the right decision, no matter how scary some bits are lol… I wish you all the luck for your future too!!! (we actually looked at getting a caravan to just travel around in, but couldn’t afford the initial outlay at this time – maybe later on 🙂 ).

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Pissed off since 1995. Mad as a hatter since way before that.

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