Six Things I learned through my sister

For anyone reading this who doesn’t know, I have an older sister with multiple disabilities. Growing up with her has had a profound impact on who I am, my view of the world and how I long for a society that is kind compassionate and inclusive – one where everyone has value and is treated with respect.

When I think back to growing up with my sister, watching my parents care for her, fight for her and agonise over making the best possible decisions on her behalf I realised I have so much to be grateful for in the way I have learned so much about life and the world because she was and is part of my life.

People can be cruel

I learned this as a very small child when out with my mother and sister. My sister was often the subject of unkind comments and stares. I saw the impact this had on my mother, I realise now how she tried to hide her sadness, when I asked her why people said such things, she would answer that they didn’t understand that Ann was different. She would tell me not to worry because what people say can’t really hurt us! Her motives were the best but we all know that is rubbish – their comments hurt my mother and me – and I’m sure some hurt my sister. Just think how many cruel comments – or actions may have been levelled at people with disabilities – it makes me ashamed at times to belong to a society that has somehow allowed such cruelty to go unchecked – any kind of ‘difference’ seems to make cruelty okay for some.

As I grew up and went for work experience in a long stay institution (called hospital) for adults with learning disabilities I found that real physical cruelty also existed. I stood up to it- the setting was largely staffed by burly male orderlies who appeared to have little compassion, indeed some seemed sadistic, as they restrained, or rough handled residents sometimes making ‘in jokes’ at ‘patients’ expense. As an 18-year-old, I told the orderlies and management what I thought perhaps without enough vigour but I was met with indifference, management were not interested – they told me it was a tough place to work and I couldn’t begin to understand just being there for 2 weeks.

People can be very kind

It is also true that living life with my sister as part of the family also taught me that people can be very kind. When out with her some people will engage when we are paying at the till when shopping and she says ‘hello’ offers her hand to shake – some will take it and ask her a question or pay her a compliment – and she will smile, it can literally make her day. She has always enjoyed ‘paying’ and many will support her making sure coins aren’t dropped in the exchange. My friends will always ask how she is getting on, some sending small gifts or notes to her from time to time – and I feel incredibly lucky to report that her carers are kind and ‘caring’.

Words aren’t the only way to communicate

I also remember that when I was probably a teenager, Ann had all her teeth extracted. Years of anti-epileptic drugs were probably part of the problem, certainly my parents were always strict about dental hygiene. Looking back, it seems such a radical step although any dental work required a general anaesthetic – she couldn’t follow instructions like staying still or keeping her mouth open, but total tooth extraction still seemed extreme. Years later when talking to my parents they explained how guilty they felt as they hadn’t realised the state of decay her teeth were in and realised she must have been in immense pain – they talked about the fact that they should have known, as her behaviour – usually not a problem though she could be stubborn at times – had deteriorated quickly and significantly.  Following the extraction, she recovered quickly and her behaviour went back to how it usually was. Even in recent years staff at her care home can tell by her behaviour that there is a problem and Ann has simply never been able to verbally report pain – but if people want to ‘listen’ they will be in no doubt as she will communicate in other ways.

People will show us when they are afraid

When Ann was still resident in what I will call an institution – a catholic convent which was her home for over 30 years – she fell down some stairs (she always maintains she was pushed). She broke her arm which necessitated a hospital stay.  She recovered physically quite quickly but become terrified of stairs – she is blind. Not only stairs but any change in the floor texture lino to carpet for example or anything that resembled a ‘step’. This lasted years. When she would visit my parents and stay with them I saw her put herself on the floor and swear like a trooper using words I never knew she knew, her agitation and fear was so great. No ‘reward’ or threatened ‘sanction’ would get her to tackle it if she felt terrified. Gradually with kind support and encouragement she improved (she has managed stairs well again for years) but there were still occasions where she become afraid and ‘sit herself down, often laughing hysterically. There were different responses but each one showed us she was afraid – if I’m afraid I want kindness and encouragement – not to be told off, humiliated or forced to do something that scares me.

Families are forced to fight

My sister – who was born in 1945 didn’t receive any education. When she was very young and it became apparent that she had significant problems, learning disability, blind, some spasticity and other physical issues, my parents were told by the consultant to put her in a home, forget about her and have other children. The fact that someone who has presumably taken the Hippocratic oath could say such a thing beggars’ belief. The utter disregard for human rights and dignity – and I could weep, wondering how many parents may have felt this was the only option and how many folks may have spent their whole lives in institutional care.

My parents didn’t listen but took her home and essentially that was when their fight started and it continued off and on until they died. The first fight was for education but let’s be honest if the ‘state’ felt it was okay to right off a life then there would be no sense in educating people like my sister as they were deemed to have no value. It was made more difficult for my sister as she was both learning disabled and blind – places that could cater for her learning disability needs couldn’t cater for her visual impairment and vice versa. This happened again decades later when I had to find a residential care home for her.

In terms of education we’d never say now that children with SEND don’t ‘deserve’ an education but there are thousands of SEND children who find themselves without a school place and miss out not only on ‘academic’ education but all the social and emotional aspects of school, yet often they are the group who need this arguably more than most.

Other than a few sessions with a home tutor she had no education! My father started a ‘club’ for families with children with disabilities to attend they had gatherings that were fun for the children and supportive for parents who are so often isolated and alone. I remember attending Christmas parties and outings organised by the group. Sadly, when services aren’t provided by authorities that should provide so often others will step up and do what needs doing. I remember my mum making mountains of sandwiches for ‘club’ nights and picnics.

There was a huge ‘fight’ to try and enable her to stay in the place that had been her home for almost 40 years when the Community Care Act came into force – it was supposed to be all about choice but staying in her ‘home’ was a choice that was removed. Then there was a fight to get her local authority to agree to moving her to the other end of the country, to be nearer to me, as my parents were aging – and several fights since over funding. But compared to what I read from others we’ve been lucky.

But why the fights- it seems LAs are reluctant still to listen to families and parents, their prime task seems to be about reducing cost, which I understand, but then I know how much is spent on tribunals – surely this seems illogical and the impact of conflict on stressed families is immense. As a social worker or SEN case worker it is a job, as a member of the family it is not, it is a deeply emotional battle for care of a loved one. Sadly too, there have been numerous tragedies which could have been avoided but somehow the knowledge of families is too often overlooked.

Inclusion is essential

My firm belief is that everyone has something to give. My sister is caring, will always ask how I am and ask after people she knows, enjoys a laugh and will make funny comments, she would embrace new experiences, though hasn’t had much chance of those recently. She literally never complains. Id like to share something about her experiences of the NHS but I think I’ll save that for a future post.

For now, I’d like to end with the thought that I can say honestly having my sister has enriched my life, probably in more ways than I realise, leading me to a career in care then education and now with a deeply held belief that we must become a more inclusive, kind and caring society.