Live in Our Shoes for a Day …….

My name is Kenneth Fletcher and I am a paid worker at CHANGE. I am developing a pack for when people with learning disabilities leave assessment and treatment units. It’s called a Discharge Pack at the moment, but we’re going to change the name because we don’t like the name Discharge Pack. I have a learning disability. I wanted to work on this project because I used to live in a care home that felt like an institution.

Working on this project has made me realize that there are a lot more institutions out there and they are worse that I thought they are. I was surprised there are so many after what we heard about Winterbourne View. At CHANGE people with learning disabilities are talking together and thinking about what is an ‘institution’. My other work colleagues all have different experiences and thoughts of what an institution means. It means different things to different people. But, we all agree on some things and these are the things that should never happen to us and to other people with learning disabilities.

There are some things that make a place dangerous and institutional. Here they are….When where we live is not being decorated like a normal home. When we are not allowed to have personal things on the walls. When we are not allowed to have our own opinion in the house. When you’re not allowed to go to bed when you want. When you’re talked into doing things you don’t want to do.

The staff  and the managers always have the power over us.

Professionals often think firstly about the money what they can and can’t afford. They often don’t want to pay for us to have a better life.

A lot of staff in institutions hide how they are when other professionals like social workers come in so they don’t get found out how bad it really is.

You need to have a really good social worker for them to actually listen to us.

An institution can be anywhere. Some institutions can be massive hospitals but they can also be on industrial estates and even in normal streets. What makes an institution is not only the building but how we are treated and respected as individuals living in the building. It is definitely how its run. Sometimes the staff call us dangerous and they call us the problem, but we feel its really them who are dangerous to us and they are often our problem. Because they have a job they have more power over us. If we need support this gives them even more power. They use that power over us to their advantage by saying: ‘if you don’t behave you can’t go out’.

So how can we work together to make things better?

The answer is to have more houses in the community with no gates or signs on the outside. Better training by people with learning disabilities who have lived in care homes and institutions and who are paid properly. People with learning disabilities working in the houses to support other people with learning disabilities and to help us stand up for our rights and say, ‘ No. That’s wrong’. As well as being our Peer support worker they also need to work with managers as managers often don’t listen to us.

Social workers are important too. We need a good social worker to support us and back us up. Even having loads of training does not mean you do what the training says, so we need to do work there too. It needs to be harder to get support work so that people who work with us who don’t have learning disabilities really want to do the job.

My message to you is: Start employing people with learning disabilities on the same wages as other staff to be Peer support workers.

Employ us to train your staff before they start the job.

Live in our shoes in a care home or an institution for a day, a week, a month, a year and you will see how we feel.




2 thoughts on “Live in Our Shoes for a Day …….

  1. Your blog is powerful I am a shared lives carer and this has made me check myself and look at my practice. Thank you for your contribution towards making me a better Shared Lives Carer. Graham Trow (Shared Lives Carer)

  2. Reblogged this on rosemarytrustam and commented:
    Such an important blog – the total institutions of assessment and treatment centres have to be stopped with people put away and left away from their home towns and families/people who care BUT we must not forget that institutions can exist behind the curtains in ordinary streets hidden. People can be IN the community BUT also kept aside by the abuse of power by those paid to care, sometimes because they don’t know and their agencies are too far away to see/care, some trying to stay in business because of cuts, some maybe just driven by profits for share-holders,but sometimes too out of ignorance. This is also a situation which can so easily risk extreme abuse. Now when LA or health funders have no capacity to properly monitor – even if as Kenneth says they were clever enough to really listen. Who does commission to ensure protection from abuse is in-built into commissions? See this month’s Community Living for one method in Elfrida’s project funded by Islington to get volunteer friends for their people stuck in assessment and treatment centres. How getting people there who really listen makes a real difference. My theory is that everyone needs someone in their life who cares & is properly informed of what should happen, not paid to be there who can then alert to issues. There’s much to do to make sure people’s lives are genuinely free to thrive and blossom with their gifts in the community.

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