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Hidden Costs

September 13, 2013

A couple of months ago. I met a PHD student who is doing her dissertation on the Mental Capacity Act. She asked me if she could include an analysis of Steven’s unlawful deprivation of liberty in her thesis. Yesterday, we had the first interview, which was mainly background – pre kidnap to the positive behaviour unit; the year away and what has happened since.

At the end of the interview, she said something that left me gasping for air – “Hillingdon have cost you practically everything people hold dear in their lives, Mark”. To be delivered that summary of the past five years by someone I had only spoken to for 45 minutes was quite shocking.

On one level, she is absolutely correct. What have Hillingdon cost me?:

* In 2009, when they gave me the ultimatum of chosing to care for my wife or Steven, they cost me my marriage.
* At the same time, as a consequence of that, they cost me and Steven our home – the home I had lived in for 26 years.
* Their illegal deprivation of liberty cost me my son for a whole year. And the cost of that continues as we both battle our demons of that year.
* Now, by stopping my housing benefit, they have cost us our current home.
* Although we have a good support package, they continue to cost me the chance to work full time and the chance to be financially self sufficient.

Even I can look at that list objectively, and see that to lose your marriage, your son, two homes and a career is a massive interference by the State into family life and the cost has been appalling.

Twice in two years, I have been praised by a judge for my committment to Steven’s best interests. That is nice but that applause hasn’t prevented any of those losses. And I’d gladly swap the applause for a home and some peace of mind.

I was talking to a friend about all this earlier and we suddenly found ourselves discussing the flip side. In being totally vindictive , Hillingdon have opened up my life as well. I think I’m quite a humble chap but the gains have been:

* I have had three books published.
* I’ve found the courage to speak on TV and on the radio.
* I’m invited at least once a month to speak at conferences and public events.
* I’m regularly asked to write for a variety of publications.
* I’ve represented myself in court twice.
* I’ve used the experience to build the ethos for the Steven Neary Foundation.
* And best of all, I know that I’m in the strange position of being trusted and respected, not only by parents and carers but by all sorts of professionals within the social care, legal and media arenas.

I know that I’m not quite in the mindframe where I can go down on my knees and say: “THank you Hillingdon for enriching my life”. Certainly not whilst the harassment continues. I might spend five minutes in that position – the other 55 minutes is spent despairing – “you bastards!”. I suspect that swing will continue for a long time.

I’d still like to be left alone though to get on with our lives.

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From → Social Care

4 Comments
  1. duncfmac permalink

    Hi Mark, your story is clearly a desperately sad one but amazing you have kept some positives and some good things have arisen because of this. I feel that by raising such issues as you are giving some of us other parents of children with disabilities some glimmer of hope that we might some day have a better society for our precious and vulnerable kids. You should be proud of what you have achieved. Keep fighting and by making your struggle public you are helping others I’m sure.

  2. Weary Mother permalink

    You have had to live through losses, fear and anxieties that few people could understand, unless like us they deal with local authorities and professionals who have such power over us and our precious children. You won through and it will be much more difficult for this power to be abused against you or your beloved son so carelessly in the future, I hope. We parents of learning disabled adult sons and daughters, who have not got your courage and live with the same kind of fear, and anxiety every day, thank you for speaking up so brilliantly, for us and ours.

  3. I can really identify with what you’ve been through. It’s so unbelievable but so true! Ditto thanks for speaking up about this – I’m sure there are thousands of similar cases which are never heard…..

  4. Emily permalink

    Your voice is heard worldwide. Love and respect from Cyprus

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