This is a true story about me and my then young family. My eldest daughter Rita was about eleven years old whilst my three sons Terry Steven and Robert were seven, our and three. So from about 1982 I was wearing several community hats. Chair of the HHTRA, The Tenants And Residents Association on Harold Hill, Director of PHIG, (A charity I had set up to help families cope with a disabled child, a parent Governor of Rita’s school (Harold Hill Community School) as well as being a new a school governor at Brookside Infants and Junior school.
As PHIG was growing, mostly due to Anne’s hard work, we were becoming more and more involved with the Spastics Society as it was then, they later changed the name to S.C.O.P.E. as well as another national charity group called contact a family, (C.a.F.). As we were meeting about once a month with one of the SCOPE. Workers (I think her name might have been Ann as well) she had very long ginger hair and was very attractive. Anyway, she mentioned, on one visit, that President Reagan’s wife was due to tour the SCOPE. Head office and would we like to be there, at this auspicious event. Of course we agreed and the experience was well worth having if not just to see the American secret service, obviously packing guns under their suits, dictating who did what where and when. Nancy, (Mrs President) with wrinkled old parchment skin under a ton of make-up – smiled and asked Anne the names of your children? To which we dutifully replied Terry, Steve and Robert – who did look rather smart in their distinctive shirts. I could almost read her mind as she looked and looked again and could not see any obvious signs of Cerebral Palsy – we of course explained that our eldest son Terry had been starved of oxygen at birth, but thank God he was relatively well compared to many of the children we were now trying to help cope, in our communities that were incredibly uncaring for the plight of parents with very disabled children. Give the bitch her due, she did say all the right words, but I could see behind the eyes that her meeting with SCOPE and ourselves. was just another photo opportunity for her to record in some diarised note, to use at some point in her memoirs.
A little while later, C.a.F. decided to hold a spectacular event of their own to highlight the needs of families with severely disabled children. The venue was in Bath and within the planning of the event I was asked if I would take on two roles. The first was to become a carer (alongside another of our PHIG members, I think his name was Chas) for a very disabled twenty year old quadriplegic man whose spastic spasms were so great that he could do nothing for himself. The second task was, between looking after Chris, I would act as “the aid de comp” to the invited Minister, Tony Newton M.P.
I had no reservations whatsoever in dealing with the M.P. (Just another Tory Shallow person I thought) but I did have any number of problems of MINE when dealing with Chris. Chris was a smashing lad, he smiled in a twisted way while throwing his arms and legs in spasm, but of course he was more used to dealing with scared “ordinaries” like me than I was used to communicating with someone like him. However, I did learn over that weekend right early on in the Friday night that Chris was a very bright person in his own right. He knew his world of prejudice, he knew first-hand about people turning aside their eyes and pretending not to see him and he knew and had experienced ALL the frustrations where kind hearted people would talk to the person pushing his wheelchair at any cost rather than speak to him. After some initial difficulties and I confess to laughing spontaneously at some of the mistakes I made in interpreting what Chris was trying to communicate in his very guttural voice, we did by trial and error – talk.
After breakfast the following morning, where I had spoon fed Chris and scrapped his chin of dribble and dabbed his mouth with the serviette a thousand times, he announced quite openly to all at our table, “what goes in has to come out, would you take me to my room”. Chas and I lifted him in his wheelchair up the two flights of stairs and into his room. In the corner sat a commode (a loo on wheels), Chris asked me to drop his trousers and pants and sit him on his loo. Chas I noticed was pleased that I had been asked, and between the two of us Chas and me, we did get Chris onto his throne. Worse was to come after plop plop Chris said with the usual accompanied arms and leg spasms, he was finished and – well someone had to pull his dangly bits to one side and wipe his bum. I do think I rose to the challenge that weekend but I also think I grew up in a number of ways.
That Saturday morning there were a number of workshops, and the Minister Tony Newton decided that he would attend “Coping with a Childs death”. Of course I arranged a front row seat and after two mums came up front to say how they did not expect their disabled child to live beyond the next five / ten years, an Irish woman from Kerry, asked if she could tell her story. She took the platform:
I could never do justice to the lovely Irish lilt in her voice, so I won’t try. But what she said was so very moving and profound. Her story was based in the prejudice of unmarried women eight years earlier, 1960s when her Michael was born, her parents had shown her the door, as their village was so very traditional, so scraping the money to transport her to Dublin, for the confinement and birth, the family were rid of her. She was scared, alone and so unhappy. The birth came with no unusual complications and ten days later discharged from hospital to some very dirty lodgings with her new son that the Almoner had found.
Not happy that her son was breast feeding properly she sought advice from a local Doctor who basically refused to deal with her. Her son cried and cried, but could not seem to feed from the breast and within days she was at her wits end. With no family or friends to advise her and the so called heath service – she confessed she was considering smothering her child and cutting her own wrists.
Eventually, she did get help from a Hospital Doctor who had done lots and lots of tests on young Michael and broke the news that her son had severe brain damage and would never live to be a normal boy. Her eyes, glazed over as she stifled a sob at this point, but she swallowed a sip of water and continued.
It seemed she shortly made a friend of a woman who had already had eleven kids. Her friend gave support, sensible advice and practical help on an almost daily basis.
Young Michael’s little body grew and despite all the negative reactions of most people around she raised her terribly disabled son, as she said, “more with love than food”. Her son was not like any other boy where a Mum could let him explore and interact; no her son was a baby, with the immediate needs of a baby right through the – as she said, “The most wonderful eight years, that have just recently ended”. But just a few weeks ago, Michael was called to the angels, and she just wanted to share with us, the love that such a disabled little boy and the joy such a disabled little boy can bring to a person.
I have not done this memory the justice it deserves, as the Mum had given such a matter of fact talk about her relationship with her son. She had said openly how no sleep, not just now and then that most of us have experienced with a baby, but years of coping in a hostile world with a child that so many people turned away from when seeing him in his pushchair. I must confess that I and any number of people in that sunlit room in Bath that day – were pushing back those throat sobs and the tears welling up in the corners of my eyes. We were in the presents of a woman who had more reason to hate the world for her suffering, but in telling of that suffering was trying to help other parents that were worried about their child’s disabilities.
Oh well, twenty seven or twenty eight years on I can only pray that she was allowed some happiness.
Well that’s all for this blog but I do hope I have stirred some thoughts about how on the face of terrible adversity and sorrow – some families do rise to the situation but how much better it could be if we all hunched down next to a wheelchair and actually communicated with that person who carries such a burden through their life. Mike.