Carer-ism and the great divide

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.”

 

Big Brother is watching your unborn child – a response

I hate that feeling you get when something is said or done or happens, that makes you realise that a lot of the stuff you, and others, have worked to achieve over many years, simply hasn’t managed to make its way into the consciousness of people who really should know better. 

Here’s what I read that gave me that feeling yesterday, posted on the Facebook page of our local research institute (and published in our daily newspaper): http://health.thewest.com.au/news/1044/big-brother-is-watching-your-unborn-child

Here is the text:

Big Brother is watching … your unborn child

MONIQUE ROBINSON
October 30, 2013

“The modern pregnancy is under surveillance. Technological advances in prenatal testing and ultrasound diagnosis have led to the current generation of pregnant women having the most observed foetuses in history.

In the not-so-distant past, parents had to wait until their baby was born before they got to see their baby and take its photograph. In contrast, the first photograph we have of my newborn son was taken when he was a lentil-sized cluster of cells at six weeks gestation. By the time of his birth he’d had so many photos taken in utero he very nearly emerged from the womb wearing dark sunglasses with a hand out saying “No paps please”.

A ground-breaking 1993 study by Professor John Newnham and colleagues at UWA, now known as the Raine Study, found that frequent ultrasounds during pregnancy did not cause any harm to mother or baby. Since then, many obstetric care providers have integrated regular ultrasound diagnosis into routine pregnancy management.

The multiple options for prenatal testing start even before pregnancy, with pre-implantation genetic diagnosis (PGD).

And there’s a new test on the block. Non-invasive prenatal testing (NIPT) is now commercially available to detect Down syndrome and other chromosomal disorders from a simple blood test at the end of the first trimester. The test has about 99 per cent accuracy at detecting Down syndrome and works by analysing foetal DNA present in the maternal blood.

A newly published WA study reports that the use of such tests can reduce the need for amniocentesis and other invasive screening by almost 90 per cent. This is an important finding, because invasive tests carry a small but worrying risk of miscarriage. At the moment such testing is expensive and the cost must be covered by the patient but it is likely the opportunities for such testing will expand in the future.

 

All of this technology and surveillance means that care providers can assess potential risks to the pregnancy earlier and more accurately than in the past. For women with high-risk pregnancies or those who have experienced pregnancy complications before, this extra surveillance can be reassuring.

But for the “worried well” amongst us, more opportunities for testing bring more opportunities to worry that something will be wrong. A recent study reported that the biggest disadvantage US obstetricians saw for the adoption of NIPT was the associated patient anxiety.

Our recent study at the Telethon Institute for Child Health Research found that more than a third of pregnant women reported experiencing stressful pregnancies and one of the most common causes of stress was the pregnancy itself.

It seems that ignorance was bliss for the worried well, who now have a multitude of sources of information on their pregnancy through all the monitoring.

It is true that risk is ever present in pregnancy and birth. Even with the huge advances in medical technology, complications can arise in situations that appeared to carry little or no risk, while conversely, high-risk pregnancies can result in perfectly healthy births.

It can be challenging for those with little medical knowledge to understand accurately the level of risk. One study found that pregnant women had difficulty appreciating simple low odds presented by their doctor such as 1 in 1000, with a tendency to internalise the statistic as meaning “I could be the one”.

This makes sense when you think that the average Australian’s chance of winning Lotto is about 1 in 45 million, yet we still continue to buy Lotto tickets in the hope that we could be the one who wins. One in 1000 is positively high risk in comparison.

It’s important to clarify risk information with your doctor and make sure you’re not worrying unnecessarily. And to save a load of added stress, always talk to your real doctor before you consult Dr Google. Make sure that for you, this added pregnancy surveillance only comes with positives.”

 I found the tone and content of this article to be pretty offensive, and completely lacking in sensitivity and respect for people with disability and their families, and I said so on the Facebook page. The writer replied that offence had not been intended, but made no attempt to find out what my concerns were. So, I wrote and sent the following message:

 

“Thanks for your reply, and though you don’t ask, I’ll try to explain here what does concern me about the article.

It isn’t the ‘mentioning’ of the NIPT testing that concerns me – as a parent of a man with Down syndrome, I’m well beyond that level of sensitivity, and I’m not suggesting that testing shouldn’t be discussed – of course it should. It’s the language that is used that worries me. It perpetuates common belief that it is wrong to continue a pregnancy where the baby is known to have a detectable condition, such as Down syndrome, and that families with children with disabilities, or at ‘high risk’ are somehow different from the rest of the community. Indeed, the use of ‘high risk’ in itself, reflects the values base of the article, which I note that another person commented on.

You write that, “A newly published WA study reports that the use of such tests can reduce the need for amniocentesis and other invasive screening by almost 90 per cent. This is an important finding, because invasive tests carry a small but worrying risk of miscarriage” and “All of this technology and surveillance means that care providers can assess potential risks to the pregnancy earlier and more accurately than in the past”. We often see this type of language in the mainstream press – articles that speak about ‘low risk’ to mother a nd baby, and “potential risks to the pregnancy” but which always omit to mention that should you happen to be a baby with Down syndrome or some other detectable condition, the testing is actually most likely to be lethal.

You go on to write, “For women with high-risk pregnancies or those who have experienced pregnancy complications before, this extra surveillance can be reassuring”. Or terrifying. Or devastating. The experience itself is far from reassuring, and the decisions that may have to be made deserve to be acknowledged when discussing testing. There is very little consideration of the mental health of parents when they are going through this experience, and many parents report being pressured to test, based on the values of the professional involved. While testing may give you information, it can hardly be termed a ‘reassuring’ process; parents who receive a negative test result still say that it was a traumatic experience.

Furthermore, the article continues “But for the “worried well” amongst us, more opportunities for testing bring more opportunities to worry that something will be wrong”. I understand that the term ‘worried well’ is used by medical folk, but use of this terminology in the article again sets apart parents with ‘high-risk’ pregnancies, who presumably are not ‘well’? And the statement also continues to perpetuate the wrongness of pregnancies (and therefore people) with Down syndrome (or other detectable conditions).

Interesting that for “high risk’ families, the testing is said to be reassuring, while for ‘well’ parents, it creates anxiety…

As I said before, we are used to reading this kind of article in the mainstream media. What really concerns me here is that TICHR has been conducting research over many years, working in partnership with Down Syndrome WA and with parents and people with Down syndrome themselves. The research aims to bring about better lives for people in the Down syndrome community, and is well respected around Australia and the world, and everyone involved has worked to Australia and the world, and everyone involved has worked to understand, develop and maintain respectful relationships between researchers, individuals with Down syndrome and families. It is therefore so very disappointing to see an article in the mainstream media like this one, come from TICHR, ignoring the very real issues for our disability community, and perpetuating the ‘othering’ and reinforcing the attitudes of diminished value that we experience from the community generally, and that we work so hard to overcome.

I realise that this will seem to be personally critical, but this is not my intention. As a parent and advocate, as well as someone who has worked towards improving attitudes towards people with disability and their families within TICHR and in the wider community, I am acutely aware of the power of such articles, and I cannot let the it go without making comment”.

So, I feel better for having said my bit, but I still have that damn feeling niggling away.

Are we ever going to really get through to people that we and our kids aren’t some kind of alien species, different from the “worried well” whoever the hell they are meant to be. Do we stop being “well” when we have a kid with a disability, and become “those others”? Will people ever get that, if we do choose to have testing, that it isn’t because our lives our tragic and our kids with disabilities are burdens that we don’t care to repeat – everyone has their own personal reasons for testing, or not testing. When researchers who work with families of kids with disabilities don’t understand, do we ever have any hope that the rest of the community will? I don’t know, but I do know that whenever we read something like this article, and are knocked for six, again, we must pick ourselves up and let the writer know that they are helping to reinforce attitudes that divide, exclude and stigmatise and should have no place in our society. And hope that they get it.

 

 

 

 

 

 

The NDIS…a chance for some certainty

Almost 28 years ago, our beautiful baby son, Tom, was born. Within a couple of days, we knew for sure he had Down syndrome. We knew our lives were changed for ever. We knew we loved him, and would always love and care for him, but we feared what would become of him when we could no longer care, and when we were gone. These thoughts and worries were in our heads before we brought him home, just a week old.

We were right;our lives have been different, in so many ways. Almost every day, I count the blessings that have come about because we have Tom. His gifts to us and all who know him are many, for those who wish to see.

Life has also been different in that we have had to fight, year in, year out, for the most basic of rights. The right to a decent education in a regular school…denied. The right to an ordinary job….denied. The right to be seen as a valued citizen….denied. So many things everyone else takes for granted…denied. Despite all this, he has achieved a lot, amazing all who know and love him. Yet, the battle goes on.

So, almost three decades later, we still ask what will become of him when we can no longer care. We have no certainty for the future. Why? Because our current disability system gives us no assurance that he will receive enough funding to meet his needs, and the current system perpetuates the notion that he only deserves to be a service recipient, a participant, a client, rather than a student, an employee, a citizen…a person who contributes to and enriches his community.

The current system separates him from others in so many ways, ensuring he treads pathways that are ‘special’ and different, that he receives funding based on what he can’t do, instead of saying ‘hey Tom, what do you want to do with your life? What do you dream of?’ and asking ‘ I wonder what it would take to help you achieve that?’.

The current system believes Tom and his peers and their families aren’t capable of managing their own funding and services, that they (we) might use it ‘inappropriately’, so, instead, other people decide what his life will look like. The current system is missing out, our community is missing out because of the lost potential of so many, many people.

The National Disability Insurance Scheme gives us a chance to change all of this. If you can get to the NDIS rally in your state or territory tomorrow, please do. If not, please support Tom, support us and support all Australians with disability and their families, current and future, (which could be you or a loved one), by sharing this message with everyone in your networks.

Our family thanks you for your support in helping to change lives and enrich our community.