Grace is 14 and has retinitis pigmentosa. She's tripped on the kerb a lot recently. She's also realised she can only see people who are right in front of her. Some boys have started creeping up on her to make her jump so she's stopped going out as much as she used to. She's got a symbol cane but never uses it and won't even think about long-cane training.
Caroline says…
Grace is trying to carry on as if nothing has changed but that's not really working for her anymore. She's even started avoiding some situations. Like a lot of people she doesn't want to be seen as different and she certainly doesn't want to be the object of someone else's "fun" - because it's not much fun for her!
The trouble with this way of dealing with things is that it can only get worse. Will she stop going out altogether? Without help to deal with how all this feels she could end up avoiding any situation that presents a challenge. Just telling her to use a cane won't work.
How can we help Grace change tack?
What Grace may really need is for someone to acknowledge how she might be feeling. This might be a big relief to Grace and allow her to admit what a struggle she's having. It surprising how often we are tempted to help someone by suggesting solutions straight away - "just use your cane", "ignore those boys", "think about how you're going to manage in the future". Grace isn't ready to "think" or "do". For her, feelings come first.
She could be angry and wondering "why me?", or embarrassed - maybe even ashamed. She might be afraid that if she can't "keep up" and do what other teenagers do she'll be left out. If she can't get past these feelings she may keep "managing" rather than using aids that will restore the independence she worries she's losing.
What if Grace was your friend?
So if you knew Grace you could find a way to say how difficult this all must be. Encourage her to say what she feels about it and let her know that whatever she feels that's ok. We can't censor our feelings - they are what they are - but once we start to let them out we can begin to move on to thinking or doing. All of us have things we can do easily and things that are hard for us - focussing on a disability means we don't see the whole picture. Grace needs to remember that in that way she is just like everyone else - a person with abilities and disabilities. Is she good at maths? Has she got a great singing voice? Maybe other people envy her these abilities.
Maybe when Grace starts to talk it will be obvious that she's assuming some things that may not be true - "I look stupid when I trip", or "those boys who are teasing me because they don't like me". It's only once Grace tells someone how she thinks and feels, that someone can talk through these assumptions and work out with her what she could do, like learning to use her cane, like ignoring the boys - or joking back with them! And if the boys are teasing her maybe they need a chat too. Although the result of what they are doing is unkind, they may not mean to be. They might just not have put themselves in Grace's shoes. And they might be paying her attention because they like her and want to get a response from her! Of course if they carry on even after it's pointed out to them that it's upsetting her, then it's really bullying and someone at home or at school needs to tackle that.
What young people say…
The advice I would give to Grace is to talk to a trusted adult about how she feels. If a teacher at school is aware of her situation, they may be able to help build her confidence, and make her feel better about using a cane. Grace's parents could also help by contacting a mobility officer in her area who would be able to develop Grace's cane skills over a natural period of time. In this way, she wouldn't have to rush into it, and could learn the process in her own time. If Grace is experiencing bullying by the boys making fun of her, I would advise her to call the helplines provided.
Harriet Smith
One active way to encourage people to think about their situation, is simply to ask them to think. Question them. Begin by asking very generalised questions that aren't about Grace specifically, but that challenge the notion of judging someone due to any difference, and later a disability. If Grace feels that people should be judged for having a difference, then questions beginning with "why" and "what" can broaden her outlook. Once Grace has established that you shouldn't judge a person, this can gently be related to Grace herself.
Another similar technique is to use someone else with a similar but not identical situation as an example, and to encourage Grace to give that person first practical and later emotional advice. In these ways, Grace can learn to think and resolve her problems herself.
Elina Inanloo
Recognising how your condition is causing you difficulties means that you can begin learning how this can be managed. It can be scary, but even more scary if someone is not aware of the practical ways they can cope and how the condition may progress. Knowing about your condition can increase confidence and can help to make it all feel less overwhelming. Talking to people in the know can be a huge help such as local support agencies who can provide you with local ports of call and maybe offer Grace the opportunity to meet other young, visually impaired people to show her that she's far from alone. It may have already been explained to Grace, but a symbol cane could help her to feel less embarrassed if she stumbles on kerbs as the cane does the talking for her. People will think: "Ah, she's not tripped because she's clumsy or not paying attention, it's because she can't see the kerb," which is perfectly understandable. It gives you the freedom to make these mistakes and also gains you the assistance you need in public places without you having to explain why you need help. As for the mention of boys creeping up behind Grace and making her jump, this could be boys egging each other on and trying to get a response from Grace. It could be that they wouldn't even bother doing this individually. A bit of fun is okay, and if Grace is able to laugh it off on the odd occasion then it would seem okay.
Louise Cunningham
What Grace is dealing with is similar to grief. The coming to terms with a loss. The last thing Grace wants to hear is "Use your cane" or "Ignore the boys" as I strongly believe this will fall on deaf ears. She is in the process of losing her sight and any words of reasoning are simply too trivial in the scheme of what she is dealing with mentally and physically. Grace must approach her disease as one might the stages of grief. The process of catharsis over a loss is that you slowly work through it and acceptance gradually becomes apparent. Once she does say all those fears and insecurities out loud, the relief will be immense and the hardest part of this emotional process will be over. A piece of advice I can give with complete authority is in no way is she different: we all look stupid when we trip, and boys will tease anyone if they think they will get a rise out of them. Sad but true I'm afraid. Grace must find her place in the world and discover her passions that make her unique, and not allow the disease to be the defining factor of her life and loves.
Georgina Wyatt
During my own teenage years I too struggled with situations similar to Graces so I can relate to her difficulties. My advice is to try and create a "circle of friends" group. Encourage Grace to write a small list of her close friends and students from her school or college she would like to be friends with and possible activities to do in the group, be creative and focus on the positives. I would recommend starting with five to six people to start with as this will give Grace the opportunity to get to know others without being overpowered. The next stages would be to agree on a time and place, I would advise Grace to do the group during the school lunch hour in a classroom as this is a busy but familiar place to both herself and her peers.
Lucy Dawson
Resources
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RP Fighting Blindness is for people with retinitis pigmentosa and has some online information for young people.
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Childline is there 24 hours a day for any young person who has something on there mind they want to talk about. You can visit their website or call 0800 1111.