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Jackie's Story
Jackie shares her story alongside Marion, Kelly and Jen who work for Partners and know Jackie well.
Jackie has been supported by many people over the years and not everyone knew how to communicate using Makaton. Out of necessity and because she is incredibly resourceful Jackie developed her means of communication, her own signs and words.
Jackie’s words and signs are clear and understandable to those who know her well. For those who aren’t as familiar with her language and signs it helps Jackie to have people support her communication to ensure she is understood.
Jackie’s expressions and signs tell her story. It is a story of love and loss, incredible determination and belief. It is also a story resonating with the transformational power of relationships, the power to harm and the power to bring joy.
Relationships are power.
History
Jackie lived with her mum.
From the age of 7-11 Jackie went to one residential school. From 11-16 years she went to another residential school.
From 16-18 Jackie went to residential college and then another place from 18 until she was 25 at which time she moved back home with her mum.
School
Jackie’s experience of school was that she didn’t really learn anything and cried a lot.
Jackie didn’t have any opportunity to gain qualifications, and Jackie has never had an opportunity to work.
Institution
After that Jackie moved to Tannerswood, a residential care facility, where she lived for 20 years.
Jackie is very clear she didn’t get to choose who she lived with.
She did not like the people she lived with.
Choosing where you live and who you live with is a human right as articulated in Article 19 of the UN Convention on the Rights of Persons with Disabilities.
Not Being Listened To
She said that they didn’t listen to her when she was upset or poorly. They told her to go away.
Relationships
One of Jackie’s support team had to leave the conversation and as she left Jackie blew her a kiss goodbye. It was such a stark contrast to her talking about living in a place where she didn’t like anyone.
Trauma
Trying to work out what makes the difference Jackie described being unwell and needing to go into hospital for an operation. She was not only anxious about health but also concerned that she might be sent back to Tannerswood. This is the trauma that people who have been ‘moved about’ experience. Jackie was in hospital for 6 weeks. Jackie’s team supported her every day in the hospital.
Support
Her team were with her all the time except when Marion went out for a cigarette break and got caught.
Distress
Jackie moved from the residential care home to her home where she lives now after her family became aware of how unhappy Jackie was.
Jackie used to spend a lot of time upset and would often find herself crying.
The Importance Of Family
Her brother-in-law recognised Jackie’s distress and understood what she was saying. He understood that Jackie would be better living somewhere else and set out to make the move happen. Dave and Jackie knew that a better life was possible.
Determined That Better Was Possible
Dave worked with Jackie and others to bring about the changes that needed to happen. Finding the right support organisation and getting the right house, with a ramp so that she could access everything she needed.
What Matters To Jackie
In addition to living with people she didn’t choose to live with and didn’t like and being supported by people who didn’t listen to her or seem to care about her Jackie was also not able to do things she likes.
These may seem like small things but they are, to Jackie, the things that make life meaningful and purposeful.
Jackie enjoys housework, hoovering and keeping her home as she likes it. She was not allowed to do this in the residential care home.
Relationships Are Key
Jackie has a team that works with her. One team member doesn’t drive but she and Jackie have a great relationship so they concentrate on the things they can do at home on the days that Maria is working. That works for Jackie and is her choice. One of the things Jackie loves is welcoming her family into her home and being a good host. She enjoys baking and although she doesn’t eat the things she bakes as she has a peg, she takes great pleasure from making things for her family to enjoy when they come to visit. This is one of the things she particularly does with Maria.
Pets
Jackie has a pet hamster.
She always wanted a pet, and this is important to her.
Tiana, her pet hamster has caused quite a stir in Jackie’s house by eating the curtains. The point being, it is Jackie’s house, Jackie’s pet hamster and Jackie’s curtains and thankfully, Jackie thought it was hilarious.
Feeling Safe
It took a long time for Jackie to feel safe to make day to day choices in her home. In the residential home she lived in the television was always on BBC 1. Jackie thought that was how it had to be. Her team helped her to know that it was her home and her choice and that she would be listened to and respected.
It is simple things like these that evidence how disempowering institutions can be.
Living Your Best Life
Jackie is not the person she was made out to be in the institution, they were their limitations not hers. Jackie recently went accessible skiing and abseiling and loved it. Jackie is a daredevil.
Being Seen And Being Part Of Something
Jackie has neighbours, one with a dog called Teddy and another who came in with her granddaughter who spent the afternoon watching the film Frozen with Jackie.
She is part of her community and is known by those who live around her.
Jackie’s life is very different from before. It is a life filled with connection and care and affection.
The thing that was so apparent spending time with Jackie and the wider team of people who support her is the genuine warmth, care and affection amongst everyone. It shone out through their interactions with each other. This is one reason why Jackie described the institution she previously lived in as ‘sh*t.’
She lived with, and was supported by people, she didn’t choose and did not like, and she didn’t feel listened to or cared about. More than anything small supports organisations are built on the foundational idea that relationships matter. They are the building blocks of a good life. An organisation's role is to create an environment where respectful, caring relationships are nurtured, and people can flourish.
So many of the things that Jackie values, being surrounded by people who care about her, having family to visit, having the opportunity to be a good host, having things to do, feeling safe, having choices, making decisions, having a pet are so ordinary as to be unremarkable. So unremarkable are they that these are the valuable things that are stripped away from people who live in institutions without any thought or consideration for the impact this has on each, and every, person.
We Must Do Better.
Audio transcript can be found here:
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