Tracey’s Ten Myths

by Tracey Eyles

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As Learning Disability week draws to a close I have been thinking about how society perceives people with learning disabilities and the myths surrounding them. We have been asking on our group page for examples of the challenges people are up against which we have shared via social media on postcards.

It has been interesting to see the diversity of views. As a frontline staff member working in an organisation as a Senior Support Worker I have observed many attitudes which I have personally challenged. Challenging peoples views hasn’t always gone down well, but I know in my heart it is the right thing to do.

I thought I would put together my top ten (or worst ten) that have seriously concerned me. I’d be interested to know if others have heard the same, and what people think about these attitudes.

So here is the top ten:

1. He challenges because of his Autism/learning disability. This is sometimes said as “that’s just what he does”, or “that’s Fred being Fred”.

If someones individuality is challenging for us then we need to take a serious look at ourselves in the mirror. But if someone is showing us a challenging behaviour it is probably because they are distressed, or have no other way to communicate their needs. Just sitting back and accepting it as a part of who they are means we are not listening to the person and have no aspirations for them.

2. He chooses to do nothing but rock in the corner all day. He has things he can do but chooses not to use them.

People with learning disabilities often have very long histories of being disempowered, expected to be passive recipients of life. They may not have the executive functioning skills to plan how to start an activity, and are probably used to trying to do things only to be told “no” or “your doing it wrong”. We need to help people to have the confidence to try new things, to start doing activities, to enjoy being engaged.

3. He cannot learn new skills – he has a learning disability; he’s too old or he doesn’t do what we ask of him. We tried it 5 years ago so there is no point in trying it again.

So this is a mix of several attitudes, but in general it is somehow acceptable to have low expectations for people with learning disabilities. A disability in learning does not equal an inability to learn. People may learn slower and differently, but in the right conditions and with the right support any one can learn. If I tried learning to drive five years ago and it didn’t work should I never try again? We need to consider that previous attempts are simply that, not rules for life. Their situation may have been different then, we may have learnt from previous experiences, the person we support may have developed new skills to help them get there. We should never give up and assume there is nothing the person can learn.

4. She’s lazy. She used to do her own cooking at home but here she does nothing!

This is no reflection on the person, more a reflection on the support. I am a strong believer of Active Support. People with learning disabilities don’t need “hotel staff” who do everything for them. There should be no “staff jobs”. Every moment is an opportunity for the person to be engaged and to take responsibility. Responsibility is really important. It’s the stuff that makes us want to get out of bed in the morning. If support does everything for you and you have no purpose, no role, no responsibility is there any point getting out of bed to be placed on their conveyor belt that they call your life?

5. There is no point giving George a choice because he always chooses the same thing and plus he cannot communicate.

Every one can communicate. If we cant understand people that is our problem. If choices aren’t being understood then you aren’t really giving a choice. If you don’t listen when the person does make a choice then is there any point choosing anything other than what is safe. Occasionally it can be beneficial to not give a choice, but to carefully support the person to have a new experience. This will help the person you support to try new things, which might help them make a meaningful choice in the future.

6. He doesn’t feel pain. He has never had a painkiller on his MAR sheet.

Again, this is back to communication. Everyone feels pain. I have met people who experience pain but cant tell other people. Maybe, they don’t know that telling me about that pain might mean I can do something about it. We need to observe peoples behaviour carefully and if someone is agitated and we don’t know why then it might be helpful to ask if they are in pain. If they cant tell you, what is the harm of giving a couple of paracetamol? If it works, make a note that you think they may have been in pain, support the person to see their GP.

7. He can’t go out today, its raining.

This is an example of a general grump I have about people putting their wants before those of the person they support. To be a good support worker I think you need a real “can do” attitude. The person I support needs my help to have a fulfilling and active life. If its pouring with rain and the person I support wants to go out I grab a couple of coats and a brolly and go for it. If they want to go the park for a run around and I am too tired, that’s not good enough. I need to give myself a slap and get on with it.

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8. You need to be back from the pub at 9 ready for the night shift.

Planning peoples lives around shift patterns and organisational needs is not good enough. End of.

9. No alcohol. People with disabilities don’t drink do they?

This is an example of where people are thinking of people with learning disabilities like they are a different breed/species. I cant stand grouping all people with learning disabilities as the same. For this example, yes there might be times when this is true, like if people are taking medications that interact with alcohol. There might be additional risks that we need to consider, like we are more vulnerable when we drink so people who are already more vulnerable could be at increased risk. But that doesn’t mean it shouldn’t happen. We should have positive expectations, and support positive risk taking. Can you imagine never experiencing being drunk? What about never seeing a live band? Never going on a roller coaster? These experiences build who we are, help us to grow, develop, and enjoy life. I’m not saying get the people you support drunk, but we need to help people to have positive life experiences,

10. He cannot be a relationship like you and I have. They wouldn’t  know how to.

People with learning disabilities are often viewed as asexual, eternal infants, who don’t want and need to express their sexuality. We know ourselves how important it is to feel loved. We know the pleasure sexual activity can add to our lives. Equally we know the responsibilities that go with this, and people with learning disabilities may need support to understand this. The people we support may be more vulnerable and need our protection. But sexuality and sexual expression should be a key consideration of support provision.

Despite lots of hard work in terms of research, Government guidelines and recommendations, sharing of good practice we still seem a long way of ‘getting it right’ and changing those attitudes. People with learning disabilities and autism deserve to have the same rights as the rest of us to have a meaningful quality of life.

To #makeitso we need to challenge peoples attitudes and approaches. This can be difficult and can affect popularity, but I see it as a key part of our role. If we don’t challenge who will?

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