1. How did you find your path to parent-advocacy?
As an Englishwoman I’m still not sure that I am a “parent-activist”. Our culture still seems to associate parenthood more with Philip Larkin’s description of what your mum and dad do than with responsible leadership. As for activism well that at the very least involves illegal protest doesn’t it, if not actual taking up of arms?
So a “parent-activist” would be a wild-haired mother hurling Molotov Cocktails. I don’t associate with such people. I was on the Playgroup Committee followed by the Primary School PTA for goodness sake.
It was my contact with Laura Collins in the early years of this century that taught me both the more American words for what I was doing and the necessity to fight for the right to do it.
As a conformist, a good girl following the rules, I joined the committees one was expected to as my children progressed from Toddler Group to Swimming Classes. If the ED clinic had had a Parents and Professionals Association I’d have joined immediately. Among the many shocks in those first terrifying years was the realisation that they didn’t, that although thousands of families must have been going through the same kinds of challenges at exactly the same time, and millions must have done over the centuries that these foul illnesses have existed, as a family we were expected to go through this alone.
I reached out via the Internet. I met a lot of very broken people, and a lot of very ordinary ones, and a few really inspirational ones like Laura.
Together we discovered that there wasn’t a Parents’ Association or an Awareness Raising Committee or a Parent Activist Group but that, whatever you called it, there was an enormous need to create one NOW.
2. What does your advocacy work consist of?
Over the years since I met Laura I have done quite a few things that might be called advocacy. Some have been fun, others have been rather scary. As the daughter of parents who met through politics I don’t mind writing to Prime Ministers. I wrote to Blair and got a reply from Brown so that dates me.
The Internet makes anonymous or discreet campaigning easy. I have accounts for most of the major newspapers in this country, and for quite a few in other countries, that allow me to comment on articles and to try to get more factual information out there and to post people to the F.E.A.S.T. website. I’ve also enjoyed speaking at various smaller conferences and events about F.E.A.S.T. as long as I have a Laura or an Erica to hide behind.
Facing my local services, the professionals who have seen me weep, watched me fail and flail, is another matter. I have done more local work, attended more local meetings and written to more local bodies, but I haven’t enjoyed it and I don’t think it has been as fruitful.
I am currently a moderator on the Around the Dinner Table forum and still do some coordinating of UK activity but sometimes feel that I am beginning to flag. Then a new challenge will come along, or, more likely, someone new will be facing the same old challenges, and I become enthused to keep on keeping on with advocacy.
3. What change do you hope to affect?
My first motivation for reaching out on-line was for understanding, to not feel so alone. My main motivation now is still to help other parents realise that they are not alone.
After that, well it would be wonderful to feel that I have contributed in some way to raising proper awareness that eating disorders are treatable biologically based illnesses. It seems to be something that isn’t being grasped quickly enough by intelligent people even within the “eating disorders world” let alone by the popular press, but I WILL keep plugging away at it. I may not be a very patient person, I may sigh and even scream when I read something stupid, but I’m persistent and I will keep on sighing and screaming and then taking a deep breath and trying to put the case for understanding and treating these ILLNESSES into polite words.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
When I petitioned the Prime Minister in 2007 it was a time when we still remembered (if with a hint or a dollop of irony) that “Things can only get better”. The petition was deliberately general, basically asking “please sir can we have some more”. More research, more support, more money.
I honestly think it did do some good and that in some areas we did get a little more. But it’s not enough. Not nearly.
Progress IS being made in treatment protocols and service provision. The existence of F.E.A.S.T. and other organisations means that people don’t have to feel alone even though far too many of them still do. The world of genetic research and genuinely personalised medicine is only just waking up.
And yet, and yet…. Progress is painfully slow. Parents are STILL,14 years on, having to challenge blaming attitudes and dismissive professionals. Patients are STILL being treated as if they are being wilful or vain, rather than sick. I really don’t think that the Daily Mail will be the first source of educated comment on anything any time soon, but the cover available in some of the professional press is almost as bad, and that is appalling.
5. Top 5 things you would share with a family facing a new diagnosis?
1. You are not alone
2. You did not cause this and your child did not choose it
3. This is a biologically based, TREATABLE illness
4. You have EVERY right to be involved in your child’s treatment but you AND YOUR CHILD deserve PROPER, tailored, support. Being expected to do things that you cannot is NOT “empowerment” it’s an abrogation of responsibility on the part of the professionals.
5. Hang on in there and enjoy the good bits like making some of the best friends you’ll ever be lucky enough to make