‘I communicate with friends and relatives all over the world. To be in touch with people is so important for a wheelchair-bound person. It is so tempting in this condition to take the easy way out, be in the grip of despair, and isolate oneself… I want to have friends on a level playing ground. I mean, they’d be happy to do things for me, but I don’t want that.’
Shanoor Forbes, 67, quadriplegic.
I don’t like going out. What do I do?
To begin with, ask yourself this question, ‘Why do you not like going out?’ Try to pinpoint the issues that you face. Do you feel awkward, unaccepted or a lack of confidence in social settings? Does your hesitation stem from a past experience that may not have been positive? Have people around you made you feel you are not good enough, or that you don’t fit in? One way to get past this is to think of a past experience in a social setting. Recollect the positive aspects of that interaction and build on that.
Another way to get past this is to ask for help. If you feel vulnerable in social situations, try getting a friend or relative to go with you. If you feel you miss out on visual, verbal or other social cues , ask friends to help you interpret these social cues, such as how to dress, eat, or interact in a particular situation. Hopefully, this will ease some of your discomfort in such situations and give you the confidence to attend them.
If you’ve acquired a disability later in life, there may be things you could do earlier that you can’t do the same way now. For example, going to a shop, a mall or a movie may be a somewhat different experience: earlier you would walk in, now you have to wheel yourself in. The good thing is you can still go to places you went before, despite your disability. You can do almost everything that you could do earlier, only differently configured.
Like everyone else, you too have the right to meet people, watch a movie, eat out, and enjoy yourself. Don’t let your hesitation get in the way. Roads and places may be difficult to access, people may be unfriendly at times, or groups may be intimidating. So what? You will gain very little by shunning the outside world, which is an experience not worth missing!
Won’t others think I am a burden when they are having fun?
Always remember that while you may have an impairment, you are more than your disability. There is more to you than your wheelchair or your white cane. What do people like about you? What do people compliment you on? What aspects of yourself do you like? Your sense of humour? Your intelligence? Your ability to listen? Every person has positive personality traits that endear them to others. You are your own person, and others will like you for who you are.
Given your disability, others know you may need some help. Even so, there is a fine line between asking for help and acting like a burden. You may feel you are entitled to some concessions or extra attention and care because of your disability. Sure, you are entitled to basic assistance, but not to being the baby of the group. If you act like a burden, others will consider you one. Keep this in mind as you try to strike a balance.
I love parties but I don’t go thinking I will be left alone.
If you love parties or want to experience them, just go. The secret to remember is to shed your fear and inhibitions. If you’re on a wheelchair, fine – move your functioning parts to the music. If you can’t see, fine – don’t worry about dancing like others. If you can’t hear the music, that too is fine – follow the rhythm of others’ feet. You can do it if you want.
Apart from dancing, there’s also food, drinks, or games. Oops! They didn’t make the games keeping you in mind. You could quickly find solutions to make the games accessible or simply ask for a partner in the game. If others don’t take the first step, you can. Maybe, just maybe sometimes it won’t work out, but that can’t stop you from trying, right?
You won’t be left out if you decide to be included. Initially, you may feel a bit awkward, but if you persist, there’s a good chance of being accepted – and included – for who you are.
My daughter is going through puberty and she is asking me questions about her body. I don’t think she’ll ever lead a normal woman’s life, so what do I tell her?
For starters, you need to accept that your daughter is becoming a woman , just like any other girl. What would you tell her if she did not have a disability? Would you talk to her about the changes her body is undergoing and explain why these take place? Discuss how her emotions and feelings would change? Tell her it’s natural to experience different kinds of thoughts and desires? Why not do exactly the same thing even if she does have a disability?
As far as possible, give her the information that she needs according to her age and mental ability. Here is a useful resource for parents on sexuality education . If your daughter has an intellectual disability, you may need to give her more basic information about her periods, safety, and masturbation. Try and satisfy her natural curiosity. Encourage her to talk about her feelings and ask questions. Let her go out with her friends, have fun, and find her own feet. It’s exciting to be a teenager, and by equipping her to do all the things she can, she’s more likely to lead as ‘normal’ a life as any other young woman.
While your daughter will go through most of the same changes as any young woman her age, her disability may raise other concerns for you.Various sources report some of the most common concerns as menstrual management, delayed or early onset of puberty in children with developmental disabilities, ‘inappropriate’ sexual behaviour, susceptibility to sexual abuse and overall changes in behaviour. Check out the tips at the end of the Knowing Your Body page for more disability-specific information about puberty.