What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Thursday, 6 May 2010

Conflict of Interest

As you know, we have kids with a disability that presents very much like Cerebral Palsy (CP).

Our son Beaver, now 9, started therapy at The Spastic Centre (TSC) when he was about 3 or 4. I was never overly impressed with the services we got there but it’s not like there is much choice (apart from having loads of cash and going private – but that’s another post altogether). The only consistent therapy he attended there was Conductive Education – although it is the only therapy TSC does not offer to everyone, nor is it free. That too, is another story. While I was not awed by the services for Beaver when he was young, things have not improved since our daughter Boo Boo started accessing TSC services, on the contrary – and I’m being polite here. And don’t get me started on the organisations’ name… But really, all that warrants a serious post of its own later.

This (long –sorry!) post about an ethical issue that really bothers me. I hope it won't get me into too much trouble...

When you drive into the headquarters of TSC you see a huge big sign. It features two cute kids with CP and some basic information. It informs people that “there is no pre-birth test and no known cure”.

So what, I hear you think.

Well, I’ve always wondered about that line, the one about there being no pre-birth test.

I’ve always more or less read it as “CP is not something you can test or plan for. It could happen to everyone – including you” or even a reassuring message to all the parents of children with CP out there “It’s not your fault honey. Come in, you are welcome here, we do not blame you here, we will help you poor dear.”

But there has always been a niggling uneasy feeling that something was not right about this message.

As I have travelled this road of disability, I have come to understand that disability is just one of humanity’s wonderful diversity. Sure, our kids have a harder life than others, and by extension, so do we parents. But on the whole their bodies are not the disabling factors. Society’s response to them – inaccessibility, exclusion, prejudice - is. Ah yes, political awareness.

So now we come to the very point of what bothers me about this “there is no pre-birth test” message outside TSC offices.

You see, TSC created an entity called The Cerebral Palsy Institute which, as its website says “aims to find a cure for CP. And establish a pre-birth test”.

I have no problem with anyone trying to find a cure.

But a pre-birth test? What is that all about?

Supposedly a pre-birth test is to better inform and prepare parents. Yeah, right!

Let’s have a very brief look at the mysteriously disappearing babies born with Down Syndrome. About 77 percent of pregnancy terminations in NSW are associated with a chromosomal abnormality (the most common being Down Syndrome) in pre-birth tests. As the director of the Catholic Archdiocese of Sydney’s Life, Marriage and Family Centre wrote in a recent newspaper article:

“The significant reduction in the number of people with Down syndrome is not due to an increased capacity among our medical healers to treat or ''cure'' those affected. Rather it is because of our improved ability to weed them out.” (Chris Meney, The Sydney Morning Herald, 29 March 2010).

Now, I don’t care much about his dogmatically anti-abortionist stand, or the way he waffles on about the special gifts children with a disability bring to their specially chosen parents (bwehh!) without ever acknowledging the daily struggle of people with a disability and their families in a government system that is fundamentally underfunded, crisis driven and dare I say exploits the love of parents and family member have for their disabled kin and does its best to ignore them.

But the man has a point. As he wrote:

“Children should be welcomed unconditionally for who they are, not for what they look like or what they can do. History has revealed where attempts to measure human dignity on the basis of functionality or appearance can lead us.”

He is of course referring to the eugenetics movement, as practices in many countries under laws of forced sterilization of people with a disability and in particular the policies of Nazi Germany, which would simply gas people with a disability as they were not worthy of life, and most certainly not procreation.

Thorny moral issues eh?

And while I really do not want to get into a debate around abortion, or abortion of a child with a disability, or even medical sterilisations – what bugs me is that the very same people who are meant to ‘provide a future for people with CP are also the ones who “envisage a future without Cerebral Palsy”

But back to The Spastic Centre and The Cerebral Palsy Foundation.

The top banner of The Cerebral Palsy Foundation states:

“We are taking on the global challenge to find the prevention and cure for Cerebral Palsy”

The website further clarifies the Vision of the CP Foundation to create “a future without cerebral palsy”. Followed by this quote from Marelle Thornton AM, President of The Spastic Centre and mother of a child with cerebral palsy:

"Surely this is the dream of every parent of a child with cerebral palsy (CP); that tomorrow no child should be born with CP."

Maybe we can, one day, cure (some forms of) CP, through stem cell research, or a new medicine, or whatever. Sure, like every other parent, I would love it if my children’s life could be easier. Sure, if a cure could be found for CP that would be grand.

But I get the sense the Foundation is appealing to our emotions and (deliberately?) confusing the difference between a cure and a pre-birth test.

Curing the CP of a child that is born is, however, quite another thing from not letting a child diagnosed with CP in utero live.

Apart from the bigger issue that it’s unrealistic to get rid of all disability, I question whether we should. Would we dare to get rid of any other minority on the basis that their life is more difficult?

No, Marelle, it is my dream to have my children, and others with CP, and others with other disabilities, unconditionally accepted and included in society.

It is my dream that people with a disability are accepted as part of our wonderful human diversity. Given therapies and equipment to improve their lives. Given education and jobs, and live life to the full. Not denied life. Not “weeded out”.

But what makes this all so hard for me to swallow is the conflict of interest between the aims of The CP Foundation and the stated aims of The Spastic Centre.

The two organisations are closely linked. Both organisations use the exact same logo of a colourful logo of a handprint with a geographical outline of Australia. The CP Foundation website enlightens us that

“The Foundation is a public, non-profit, tax-exempt organisation established by The Spastic Centre of New South Wales. The Cerebral Palsy Foundation Pty Ltd is a proprietary company limited by shares (Australian Company Number 069 475 387) and the sole shareholder is The Spastic Centre of New South Wales, a company limited by guarantee (Australian Company Number 000 062 288). The directors of the Cerebral Palsy Foundation Pty Ltd are appointed by The Spastic Centre of New South Wales. The CP Foundation currently has two directors: one who is also President of The Spastic Centre and Chairman of the Board of Directors, and another who is the Vice President of The Spastic Centre. Of The CP Foundation’s 11 honorary governors who assist the Cerebral Palsy Foundation with its fundraising initiatives, 5 have a close link to TSC.

We know from the website that “The Spastic Centre founded the Cerebral Palsy Foundation to realise its vision of a future without cerebral palsy.” Yet the 2007-2020 Strategic Plan of TSC proclaims TSC is all about “creating futures for people with CP”.

So, the President of TSC wants, one the one hand, a future for people with CP, and on the other hand, a future without CP.

And this is supposed to make sense to me?

This is not supposed to be a conflict of interest?

Well, bollocks. It is.

How can you provide services for a group of people you aim to get rid of in the first place? It just doesn’t sit well with me.

As it happens, I got an opportunity last year to put this before Marelle Thornton (Chair and President of TSC and one of the two Directors of The CP Foundation) and her colleague Rob While, the CEO of TSC

When my friend Sue O’Reilly and I breached this issue, Rob and Marelle rolled their eyes and assured us that they have extensively discussed this at the board level and it’s fine. Oh, and they have an Ethics Committee, you know.

Well. That’s all right then, isn’t it?

The “trust me” argument always convinces me instantly – that there is indeed an issue.

Some weeks later I bumped into a Board Member of TSC in a local coffee shop. He noticed our daughter, and we started chatting. This issue came up, and the amicable conversation suddenly turned sour. He went all very passive aggressive and assured me again that the board had dealt with all the ethical issues and there was no conflict of interest between the aims of TSC and TCPF. Oh, sure! When I told him that this might be so, but some parents viewed it as an issue, and surely they should listen to their stakeholders and in some way respond, he dismissed that out of hand with an irritated shrug of his shoulders. The conversation ended there, rather abruptly.

I am not convinced.

Just because the board of TSC, in its definitely infinite wisdom had decided all is well, does not mean I think all is well. And I can tell you, I am not the only parent feeling uneasy like this.

I think there is a glaring conflict of interest.

But what would I know? I’m only a parent.


Susan, Mum to Molly said...

Excellent post Heike. One you've obviously put a lot of thought and research into.

I wouldn't worry too much about the trouble you might get into - what are they gonna do, withold their paltry, next-to-nothing "service"??

I'm really beginning to wonder whether we actually see meaningful reform of disability services in Australia during our lifetime...

Take care, and enjoy your surprise on Sunday!


PS: Does BooBoo use her Hart Walker much? Ours is gathering dust in the corner of the playroom room, untouched for months...

Jacqui said...

A great post Heike.

I was once talking to a "sporting" hero who was lending his spare time to a charity that I was also helping out. He asked me if the charity gave money to research to prevent CP? The question took me by surprise and I answered "No", before going on to say that there wasn't a cure for CP. I really hated the question and it really made me feel very uncomfortable. As if his support relied upon CP being banished by these good drs that save lives. I know that you can probably sense the sarcasm dripping from that comment.

If I had have known when I was pregnant that I was going to have a child with CP, would I have gone through with it. I can now answer the question with a million times yes. Fortunately, I'm not the saint I appear to be as we were always told that the chances of Moo having a disability were high and we still continued with the pregnancy. He just ended up with the disability that no-one predicted;-)

Again, great post. And I don't think that you will get into trouble for your thoughts because they are supported by this parent sitting right here.


bluffska said...

Thanks Heike, keep sniffing, keep provoking thought, change in an organisation like TSC can only come from the grassroots- they can't even realistically consider changing their ghastly name! Chris

Liz said...

I agree this is a great post Heike, and I agree with your feelings about a conflict of interest.

I'm in Qld so we don't get services from TSC (oh please , they HAVE to change the full name!), but am interested in knowing how the funding is split between research into finding a cure/pre-birth testing, and providing services for their 'clients'.

I do hope the balance weighs more heavily on current service provision...


Erin said...

Oh a life without CP - a life I have always dreamed about.

You are right though. A world where disabities were 100% accepted would be better.

You write so well. Good on you for your passionate opinions and well written thoughts.

Gina & Mac said...

Great post.

No conflict of interest... yeah right.

TSC have conned the community for years - they are the masters of using fear and pity to appear as though there is a genuine and meaningful role for them in society. I don't believe there is - if TSC didn't exist would anyone notice... or would we simply notice there was one less "hoop" to jump through?

Katie said...

Oh Oh - The CP Foundation is the one that have the scripted advert featuring several small children all saying what they want most: a puppy, a pony, that kind of thing. And then they get to a girl with CP who says, "I want to walk like the others" and wobbles off into the distance. I *think* it's the same foundation, I recall it being Australian.

Anyhow, I stumbled (ha - pun intended) across that advert on YouTube and was horrified. Apart from anything else, as someone who has direct experience of being a small girl with CP, I'm pretty sure she gets frustrated with having CP sometimes but what she REALLY wants is a puppy or a pony, like those others...

... Totally horrified that the Foundation seemed to suggest that it was entirely right that she should be so full of self-loathing at such a young age - for surely, if you want to walk 'like the others', self-loathing is implied - and that a cure is an essential, rather than, y'know, highlighting the importance o helping young CPers to develop self-confidence and independent living skills so they can get on with their lives.

Genuinely, I'm not easily offended by such things, but that advert really really upset me.

So, from limited experience, I am not remotely impressed by the CP Foundation and the message it projects, and would not want to attend any organisation entangled with its schemes.

More power to your elbow!


Heike said...

Yep Katie, the very same Foundation. Such a track record of sensitivity eh? Boy oh boy, where to start?

Gina @ Inky Ed! said...

I wrote to "them" at the time of that ad and said surely that isn't what that little girl really wants, I queried (with honesty) if any kid wants to 'walk' like others - they might like to run, jump, skip - but walk - it's so boring... so 'lame' (pun intended). They assured me they were her words - I responded saying how sad I felt for that little girl that she had never been taught to look beyond the shallowness of that 'wish' and is clearly surrounded by those that make her feel like it is important. I am sad she had never been taught to 'dream big' so she might 'fly' rather than walk like the others. I wish she could listen to Amy Mullins and learn that "beige is boring" and set a new path for herself.

Big brother, Little sister. said...

Heike, wonderful thought provoking post that i am sure I will read over and over again.
That whole wanting walk business also confuses me as when Cooper had a fairy to blow in the garden the other day he said " I wish for a really big gun! and some barbies for his sister" lol Bron xo