2.3 Hearing the voices of young people with learning disabilities

You may have identified that sometimes there is a tension in the role of a parent or caregiver between providing protection and nurturing and allowing growth. This can, for example, be particularly apparent during adolescence where individuals may be asserting their independence and wanting to develop relationships and to express their sexuality.

Many young people who have learning disabilities have their voices ignored as it is assumed that a parent or carer can speak for them, or that they do not really know what they want. Obviously, people of all ages (with or without a learning disability) have opinions, thoughts and ideas – and need to be able to make their choices known.

Knowing how and when to advocate for someone, or when to support someone to advocate for themselves, can be difficult. You don’t want to speak for someone when they can speak for themselves as that can disempower them; likewise you don’t want to assume that someone is comfortable talking about a sensitive subject, for example mental health or sex. Additionally, there are often parents, family members or carers who may have their view on the topic (whether they have a legal say over the issue related to the young person or not).

Activity 9 will help you explore some of the topics around supporting people to have their voices heard, potentially either by helping someone speak up for themself or speaking up for them.

Activity 9 What can you do to help advocate for young people who have a learning disability?

Timing: Allow 60 minutes

This activity will help you explore the topic of advocacy and to consider the skills that you may need to employ when addressing potentially sensitive topics with a young person and their family.

Watch Video 3 of young people with a learning disability recounting their experiences of not having their voices heard, and of how they have advocated for themselves. As you watch, make notes on how you can support young people with a learning disability in having their voices heard and consider the conversation or approach that you may need to take with their parents or carers. This will help you to identify some of the skills and learning opportunities that you may want to develop in supporting people’s voices.

Download this video clip.Video player: Video 3

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Transcript: Video 3

[MUSIC PLAYING]

[ON-SCREEN TEXT Respecting the choices of young people with a learning disability]

LISA DAVIDSON

My name’s Lisa Davidson. I work for a place called My Life My Choice, which is a self-advocacy charity for people with learning disabilities. And today, I’m here to discuss with a number of young people about the theme of advocacy. I would love to know why you think it’s important for people with learning disabilities and yourself to have control of your own decisions.

MINTY

Because they have to personally live their lives and lead a happy and normal life without depending on family members to help them out.

RUBY

Yeah, we are in control of our own lives. We should make our own decisions as long as it’s safe and it doesn’t do anyone harm. We wouldn’t really want anyone, like, to tell us what our lives should be and what they shouldn’t be. You get to do what you want to do and socialise the way you want. You get a chance to speak up for yourself on different opinions, on different views about lots of different subjects.

SHAUN

The reason why I think it’s very important to us, being able to control our own destiny, is because so that things do not go by, like do not resuscitate being one of the examples, prime examples, actually, of how things have been recently. The good practice in this country is that people with learning disabilities who have do not resuscitate on that list is to basically kill them off, to be blunt. And that’s without asking for our permission whether to be do not resuscitate or not. In my opinion, in my humble opinion, it is wrong.

LISA DAVIDSON

Could you describe a time in your life where your choices or your opinions have not been respected?

MINTY

Basically, it was in 2009, and I had to, like, have a major operation on my mouth, and I had no choice. Either I had to have it then or later, but later in life is going to be really painful, so I had to have it then. I really don’t like it. I had, like, two months of college off, because if I fall down, I will basically ruin the operation. So I said I don’t want to go in, because I know I will have to have someone with me all the time. And I didn’t really want that.

SHAUN

I was actually in a nightclub, and I was on my way home, only to find out that actually I got locked out by my staff who actually knew I was already out working. And yet they thought it was actually OK to lock the door. So it got to a point where I still rang the doorbell, knocked the door, still no answer. So we decided – I decided to ring a colleague, and they decided to ring the police.

So it was actually staff ended locking me out even though that I knew, and so did the service manager, know, I was actually going out to do the nightclub as I normally do. It becomes necessary, because obviously for someone like me, I need my tablets. So I didn’t have my tablets that night, or I didn’t get into the house till quarter to 12. I was scared, really scared, because obviously I’m vulnerable and you don’t want a person with epilepsy on the outside. It was extremely scary. Thankfully, the police were involved.

LISA DAVIDSON

But can you think of any other times where your choices or your opinions were respected?

RUBY

So I studied media level 2 in 2013 and finished in 2014. And during the summer holidays, we were set the task to come up with a new story for one of the video projects for the course. And we had to make sure that our planning was thorough because only three were to be selected. And my media tutor picked my story. The subject was one of the three that was chosen. So I was very happy about that, and I told my friends and family about it.

SHAUN

So I decided that the best thing to do was to move out, and then the decision was made by my, lucky enough, by my support worker. And I basically picked my carer – because I had the choice of two candidates. I got very, very lucky. And I picked my carer and decided that it was the best fit for me, and it has proven that way. So I feel valued in that sense, by the learning disability team, and by the council who are working with me now.

LISA DAVIDSON

Any advice for professionals in any sort of setting on how they can best support people?

MINTY

Just take the time and listen to them. If they have a stammer, which means they find it hard to talk just sit down, go have a coffee or tea, and just listen to them. Or get equipment for them to chime in.

SHAUN

Listen to what the person’s saying. And basically, when they communicate, when the person who is vulnerable communicating, hear to what they saying, and don’t try and belittle what they’re saying, because it’s actually really important that what they’re saying is what I mean. And morals and respect, obviously. Respecting what the person is saying and what their actions are. And don’t contradict.

So basically, don’t turn it around, or don’t turn the words on to them. Say, OK, I understand what you’re saying. If you don’t agree with it, then say so, but I would personally – you’ve got to have a good reason not to agree.

RUBY

Yeah, for me, I would like my local GP doctor to speak to me, and then if I did have a support worker or carer, then they could chime in and say some things, and yeah, the doctor could ask some questions if needed. I know myself. And yeah, I can say what I want to them respectfully.

LISA DAVIDSON

Any other suggestions or advice do you have for any professionals out there?

MINTY

Take their time, do not rush, and go into a small room, or go to their home environment. They are more likely to open up in their own homes because they won’t open up in the doctor’s office, because they don’t know it.

RUBY

So like, the skills for a support worker to self-advocate the individual person as well as to the parents, it’s like, too late. Talk to the parents. And also talk to the individual about whether it could be in person or in a video chat or email or phone call about who the person is or what their hobbies are or what they do as a job or voluntary work. And also, talk to the parents as well to see if it’s OK for the support worker to work with the individual person. And respect their choices and their wants, or their needs.

SHAUN

They need to be soft speaking, and they definitely need to be – on one hand, they need to be aggressive with parents, because the parents obviously – unless they have a disability themselves, but usually they do not on the accounts I’ve heard. They would need to be more aggressive. And then with the people with the learning disability, they need to be more softer.

And I think the parents may not like the fact that the learning disability nurse or the professional’s being aggressive, but the fact is, you’re making a judgement which is wrong. I know a friend who actually – the parents actually disagreed with them getting married, even. So it wasn’t about the relationship. It has to do with marriage.

And for me personally, I think the support worker would have to sensitively let the – talk to the parents first, and then talk to the people with the learning disability and explain to the parents why it’s OK for that to happen, because the fact is – marriage is marriage, you know? You don’t diss it just because the person’s got a disability. Absolutely not.

So for me, it’s about the parents understanding that there isn’t anything bad that’s going to happen. Everyone makes assumptions at one point or another, and it’s just a bad thing to do. And we all make mistakes. We’ve just got to learn from them.

[MUSIC PLAYING]

End transcript: Video 3

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Video 3

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Discussion

You may have identified some, all or different areas for your own development:

• listen for and pay attention to the choices that the child or young person is making
• make information more accessible for the individual
• gauge understanding
• assess risks and potential consequences
• sensitively raise choices with family members or carers
• facilitate discussion
• assess and, where appropriate, teach skills
• advocate
• challenge assumptions.

Helping people to have their voices heard can be a challenging but rewarding task. It also has the potential to make significant developments to a person’s autonomy and independence.

Having explored biological conditions, such as asthma, and some of the social aspects of learning disabilities, you will now explore some psychological conditions that present in childhood and adolescence.