I’ve had a blog about what I term carer-ism bubbling away in my head for some time, but because I can be a pretty slack blogger and often need something to raise my ire, I haven’t spent the time to develop it into the final piece, until now…
A couple of things have put a cracker under me this week, helping me to understand why I just don’t connect with carer-ism at all, and firing me up to write this.
One – hearing the parent of an adult woman with a developmental disability speaking at a forum, I was horrified to hear very intimate details of the woman’s life being told to a large audience, mainly other parents like myself. The details were by way of an introduction to another topic, and seemed a really unfortunate, unnecessary way to set the scene. As I sat, aghast, I looked around and wondered if anyone else felt as I did, and was kind of shocked to see there were no, oh, perhaps one, looks of embarrassment or discomfort. I could be wrong, and others may be better at hiding how they felt than I did, but it made me wonder how we get to the stage as parents, where we think it’s ok to talk about our sons’ and daughters’ lives, their intimate details in such a way. Would we do it if they didn’t have a disability? Maybe, if we were on Jerry Springer, but that’s another blog…perhaps.
Secondly, I read a thread on a Facebook group this morning that absolutely sickened and saddened me, for a bunch of reasons. It was a thread where people began by talking about the implications of moving from congregate settings of care, and both people with disability and carers were giving their views. Some of the people with disabilities had experienced institutionalised living and were very vocal in their opposition to it, and rightly argued their point. I was hugely saddened by the response of carers – it was so disrespectful and their responses flippant, sarcastic, patronising and downright rude to the point on name calling using the acronyms this group seems to love to label people with disabilities. Just what I needed to light the fuse this morning!
The rest of this blog is the response I posted. I’d really be glad for any comments, feedback etc on my blog and especially on how we can bridge this great divide between people with disabilities and ‘carers’.
“I’ve come late to this conversation, but from what I have read, I’m appalled and disgusted. No wonder people with disabilities rail against the carer movement, when these appear to be the prevailing attitudes and behaviours.
I’m a parent of a young man who has what some of you call a SPID, or perhaps I have it wrong – maybe he IS a SPID, just as Samantha and Glenda are Verbal Disableds,or VDs, in your eyes. I also have a young grandchild with severe regressive autism, let’s call it SRA, for fun, shall we. And while we’re on a roll, maybe I can give myself a handy label, PWISOPWDBLWOA. Person who is sick of people with disabilities being labelled with offensive acronyms, in case you were wondering.
I’ve been around the disability scene a while. No, maybe not as long as some of you, but this isn’t a competition. The reason I mention it is twofold.
One, as well as being a family member, I have also worked in the disability sector for a long time, in a variety of roles, including as a quality monitor, which took me into a wide variety of services, including group homes, hostels, day centres and many others. In my younger days, as a school student I volunteered at an institution for people with intellectual disability – a ‘progressive’ one – cottage parent model. As a young student nurse in the mid 70s, I worked in Perth’s large psychiatric institution, which also still housed people, adults and children, with intellectual disability. Lots of SPIDS there, folks, and I saw things there that haunt me to this day. So, my feelings about institutions, labelling and plain old respect for people as human beings have been shaped by real, raw experience, and were there long before my son was born.
Secondly, even though I worked in the field a long time, and sat on many committees with people with disabilities, counting some as my friends, it was a long time before I learned that there was this massive divide, this chasm, between people with disabilities and carers. Call me an SL (should be easy to work out) if you will, but I really hadn’t realised and it hit me like a ton of bricks. And at first I was puzzled, because I’d never seen it myself, though I had wondered why some young people I knew with physical disabilities were so vehemently opposed to the carer movement and carers being involved in what they saw as being about disability. And, as I thought about it, and began really listening to people with disabilities (thank you friends), and listening to some of the things I heard parents saying about their children (of all ages) and their lives as carers, that it slowly dawned on me why that chasm exists. Somewhere along the line, many parents have forgotten to acknowledge their sons and daughters as people, (yes, even the SPIDS are, who knew?), with all that goes with being a person. And they have taken on the persona of carer, rather than parent, with all that goes with that role. All of which takes us, as families and as people, far way from the real lives we should be having.
I’m not diminishing the love and dedication and hard work of many family members; I am saying that I don’t believe this current way of being is the way it should be, and I do believe there are better ways. The better ways involve bridging that chasm between people with disabilities and ‘carers’ – doing whatever it takes to get there; respect would be a good place to begin. I believe we also have to move beyond the old ways of thinking about just about everything for people with disabilities – housing and supports (not ‘accommodation’ please), ‘respite’, the lot. Because as long as we hang on to old ‘models’, however they refurbished, we can’t begin to think about real lives for people – both people with disabilities and those who care for them.
So, this is why I’m so very sad to read the disrespectful responses here, and why I simple can’t relate to ‘carer-ism’. To me, it’s a sad by-product of a system foisted on us by government and societal attitudes to keep us in our place, with stories of courage, martyrdom and wasted lives. I’ll pass on the Carer badge, thanks, and work towards a world where we can all proudly wear the label of Person.”