Tag Archives: learning disability

Do they eat them Jack?

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I have been thinking about my aunty Muriel, my mother`s older sister, who died many years ago. I think Mu would have been about seventy when she died, which is remarkable given the enormous challenges she faced throughout her life. It is testimony to the marvellous care that Muriel received from both my parents and particularly my mother, that she enjoyed such longevity.

Mu was born with (I believe) cerebral palsy and had a learning disability. We would have called her spastic back in those days before the term was recognised as derogatory. When I was older, my mother Bess explained to me that Mu`s disability may have been caused by my grandmother attempting to abort her pregnancy.  Unsuccessful in the attempt, she may have damaged Muriel before she was born. I don`t know if this is possible, I think there may be some truth in the tale as my mum was not a person who made things up but in any event, Muriel was meant to be born so she arrived on earth and grew up in the early nineteen hundreds, on my grandmother`s farm in Birmingham.

Children can be very cruel and of course Mu was “different” so she had to be accompanied to school and home again as sometimes the other children would call her names, she was often protected from being bullied by her brother Seba and my mother.

As Muriel grew up, the main carer for her was my aunt Lillian who loved her very much. My grandmother was not at all maternal so it`s a good job someone was. They became constant companions and when Lillian was an old lady, they moved to live together in a small cottage in Knowle, near to my mum and dad who kept an eye on them both. When Lillian died, ancient and frail when I was about 4, Muriel came to live with us.

Mu`s disability affected her mobility quite considerably. She had difficulty with her breathing, she often dribbled which left her with a wet patch on her chest. She had difficulty with her speech and couldn`t do anything in a hurry. She needed help sometimes with buttons and zips, we had to cut her food up for her, everything Mu did was done in slow motion but her situation did not prevent her from having friends and family who loved her a lot. As a child, I didn`t think I loved my aunty Mu. As an adult I realise I did, I just didn`t know how to express my love to her. Being hugged by Mu was like being hugged by a bear!  I think as a child I was slightly embarrassed by her, I am ashamed of my childish self now of course and if I could meet Mu in the present, I would throw my arms around her and cry and ask her to forgive me.

Mu had a passion for photography and liked to take pictures of us as children. We would pose for what seemed like hours as Mu fiddled away trying to get the position of her camera just so. Even now, if I take my time taking a photograph, my family refer to it as “doing a Muriel” and it makes us smile.

She had a great sense of humour and if she started to laugh at something that had tickled her, her huge shoulders would heave up and down and her throaty laugh would continue until she could compose herself again. I have a memory of being in a church at a relative`s wedding I think. A child started to fidget and make a noise, then I heard a smack, and the child immediately began to cry. Muriel began to laugh, so did I, it was like a domino effect.

Another time, I recall Mu threading peanuts on to a wire for the birds (I may have told this tale in another, long ago blog.) It took her forever and as she sat in my parents` kitchen completing the task, she asked my dad, “Do they eat them Jack?” “No Muriel,” my father replied, “They shove them up their arseholes.” More, uncontrollable laughter from aunty Mu, I remember it vividly, it was especially funny for me as a child because my dad rarely used swear words.

When I was 12, dad bought me a guitar and my brother`s friend Rod taught me how to play it. Mu loved to hear me sing and her favourite song was one of my favourites too, Plaisir D`amour, made famous by Joan Baez. I would sit on the kitchen table, my guitar perched on my lap and sing and Mu would listen to me and cry, she could be a very emotional woman. I had a very pure voice as a young person and did a lot of public singing and I have already heard the joke about why she was crying. Many times!

So there you are, a little snippet of life with Muriel. If I could speak to her now I would say thank you, for enriching my life so much, even though I wasn`t aware of it at the time. I am absolutely certain it is my experience growing up with someone with a significant disability which steered me towards the fantastic career path I have enjoyed so much.

Thank you aunty Mu, you were a star.

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Sometimes it`s a pain being an advocate.

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I go to court a lot in my capacity as an advocate.  Most commonly the hearing will be related to child protection proceedings and my job is to support parents who are trying their best to understand what is happening.

Imagine yourself sitting in a court room surrounded by at least thirty people in suits, most of whom you don`t know and you certainly don`t understand what their role is.  You believe you are in trouble of some kind and worry about the judge and what they will think of you.  Your learning disability means that it is really hard to follow the proceedings, the barristers are talking too fast and they are using big words like `redacted` and `Residence Order` and `interim` and `Special Guardianship` and you are thinking, “What on earth does that mean – I haven`t got a clue.”

It is a really scary time for any parent and particularly so for those who have a learning disability.  It is why advocates are so important because they play such a vital role in assisting parents to understand what is going on and why and the changes they need to make in order to be the best parents they can possibly be.

Time and again in court, I have been personally thanked by judges for my contribution to the proceedings.  Removing children in to care is one of the most serious decisions a judge can possibly make, with far reaching consequences for the child and their birth parents.  Judges are extremely careful to ensure that anyone with a learning difficulty has received appropriate support and more often than not, too late in the proceedings the judge will be made aware that they haven`t.   Child Protection proceedings can often be delayed for months while judges ensure that parents have had appropriate assessments so that paperwork and court hearings are especially geared for parents` particular levels of understanding.  These delays hurt the children.

Why is it then that social workers and other professionals do not always make the same efforts on behalf of their clients?  It makes me so cross!  Here at Solihull Advocacy it is not unheard of to receive referrals for advocacy a few days before the baby is due to be born, or the day of the final hearing.  It is much too late for us to work effectively with those parents and so the whole episode becomes a tragic, hand holding exercise as we sit with parents while babies are removed into foster placements.  It saddens and disappoints me because many of those mums and dads would be doing so much better if only children`s services had introduced an advocate to the case much earlier.

This week, I went to a Residential Review at an assessment centre where parents live with their children for up to 12 weeks, sometimes longer.  I commented that I hadn`t had sight of the report prior to the meeting which is pretty poor show and I was handed a 30 page report at the start.  I was given little opportunity (e.g. would you like to spend five minutes with Helen before we start?) to properly go through the report with my client and the result was that she became upset, angry and defensive, none of which would help her case. It is just so thoughtless.

It is also common for social workers not to get back to our e-mails and telephone calls which is not only rude and unprofessional but also frustrating for advocates and very unhelpful and disrespectful to the people we support. Not to put too fine a point on it – it is BAD PRACTICE.  Hey you there – social worker – we all have busy schedules you know!  If I didn`t return calls or e mails then my manager would be asking me why?

If you are a social worker or any other professional working with parents who have a learning disability, do me a favour would you, keep me in the loop, the earlier the better!

🙂