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Disability - living with someone who has a disability

disability; handicap; brothers; sisters; siblings; family; carers; responsibility; disabled; illness;

Contents

Being disabled means not being able to do things that other people of the same age can do because of how your body or mind works.

Most people who have a disability will be able to do lots of normal things and have lots of fun and enjoyable times. But, some of the time life will be difficult and may be unhappy for them.

Some people with severe disabilities, who need other people to look after them all the time, may not even be able to show when they are feeling happy.

Issues for brothers and sisters

  • Family life may need to be arranged differently to allow for the treatment and training needs of the person with a disability.
  • Family outings and activities (where the family can go as a family) can be affected.
  • You may miss out on time and attention from your parents, and feel jealous of this.
  • Sometimes fights breakout between other family members because they feel they cannot disagree with the person who has a disability.
  • You may feel guilty if you complain because you are expected to be sympathetic or take extra care of your sibling. 
  • You may be afraid of what the disability means to you; you may not understand that you cannot catch it.
  • You may not want your brother or sister around when you are with your own friends.
  • You may be embarrassed by your sibling's behaviour.
  • You may be asked to act as a carer to help your parents out and you might resent this.
  • You may be worried and upset when your parents are upset, especially if your parents are grieving or fighting (which can happen under stress).
  • You may feel a pressure to succeed at school or in sport to make up for your parents' disappointment when your sibling is not able to do things well.

Helping out

If you have a brother or sister who has a disability, there are things you can do to help out.

  • Learn about the disability and how it affects your sibling.
  • Learn how to help look after your sibling.
  • If your sibling is at your school, ask mum, dad or your caregiver to talk to the teachers so that they know what to expect and how to help.
  • Ask mum or dad to practise with you by asking you questions that other people might ask, and work out what answers you can give. This way you will feel more confident and will not be stressed out by questions from people who don't understand your sibling's disability (especially the silly questions).
  • Encourage your sibling by praising what he or she can do.
  • Help by showing your sibling how to do things.
  • Encourage your sibling to do things for themself.
  • Encourage him or her to do things for others, like doing chores around the house.

When people are unkind

Sometimes people are unkind when they are faced by something or someone different. You may need to help your sibling cope with this. You may need to learn to cope with unkindness towards you too.

People often tease or don't know what to say when they meet up with a disabled person. Tell people when you think they are unkind, then tell a parent or the teacher about it. Try to be firm not aggressive.

Talk with your family and decide together how you will deal with people staring or making remarks. Think about what you could say, and how to say it without getting upset. eg, "My brother has a disability and sometimes he shouts when he gets excited. He's not behaving badly."

Support for yourself

There are groups for young people whose siblings have a disability. You may find it helpful to know others who are in your situation who understand that you can have lots of mixed up feelings at times.

Often the doctors, nurses or social workers who are helping your brother or sister, or your parents, will know of support groups for siblings. Check out the Resources section below.

What brothers and sisters say

This section has some of the issues that have been raised by brothers and sisters, with some suggestions for what might help.

"People ask what it is like to have a brother or sister with autism"

You may learn to answer something simple but truthful.

  • "Normal - I have never known anything different"
  • "It can be a pain sometimes, but so can my other brothers and sisters"
  • "She is my sister, not just someone with a disability".

"I am afraid that when my parents die, he will be my responsibility"

  • Talk through this issue with your parents so they can hear your fears, and talk about what can be done to plan ahead.

"I hate asking my friends over to play because my brother always joins in and spoils the game"

  • It's okay to have time with your friends. Brothers and sisters do not always want to include each other even if no-one has a disability.
  • Talk with your parents and help set up a place for your sibling with some special activities eg a video or TV, for when you have friends over.

"I always feel I have to explain to my friends that it is not genetic, it is not part of me and it is not catching"

  • Some conditions are genetic (run in the family) and some are not.
  • Find out about the disability so that you can feel confident about explaining it to others and yourself.

"I can never have my party anywhere I want to because she has severe asthma and these places would make her ill"

  • Children and young people should be able to have their special occasions with their friends.
  • Some families have two birthday parties - one for the family where everyone can go and one just for friends.

"My mum and dad could never watch my sport because they had to care for my sister and she would misbehave"

  • Maybe mum and dad could try taking turns to watch your sport.
  • If it is a special match that both parents want to watch it may be possible for them to take your sibling and watch the match from the car or maybe their parents or friends could help.

"My sister always gets the biggest part of mum's time and she gets away with everything because she's got problems"

  • Everyone needs to learn to respect each other. Young people with a disability will fit in best and be more accepted if they are able to behave in the ways that are expected of others.
  • Talk to your parent or carer and let them know how you feel, but be prepared to listen to their feelings as well.
    • Talking quietly together will help.
    • Your parent may not be able to change this, but sharing feelings may make things easier.
    • Remember that parents of a person with a disability can get really, really tired.

"My friends sometimes call people 'spastic' when they want to put them down. My brother really is spastic".

  • You could reply by saying what spastic (or whatever word is used) means, and that it isn't fair to tease people who can't look out for themselves.
  • If friends actually make fun of the person with a disability you might say something like "He does have some problems, but he is really good at…", or "Everyone has some problems. He is my brother and I feel sad when you tease him".
  • Bullying is not OK and should not be tolerated. Sometimes you can help, eg one sister used to say "My sister was born like that, what's your excuse?!" This made the teaser stop and think.

"I am not a person in my own right, I am just Sam's sister"

  • The whole family might need to give a lot of time to the person with the disability, and naturally you all want that person to feel special, but it is important that all the people in a family feel special.
  • Try to make regular special time with each of your parents or caregivers.
  • Spend time with other siblings and be interested in what they are doing.

"I have to care for my brother a lot when my mum is working because he has muscular dystrophy and is in a wheelchair, and I can't play with my friends"

  • Brothers and sisters of someone with a disability sometimes have to carry extra responsibility, especially in single parent households.
  • This responsibility can help you to be more independent and have more skills and maturity than other young people.
  • On the other hand all young people need time to do their own thing so it is important to make sure you get this. This might mean you have to negotiate for someone else to stand in some of the time.
  • It's normal to feel overburdened at times. Talk to a trusted adult about how you are feeling.

"I often feel disappointed, because when my parents plan something for me, something goes wrong for my sister and we all have to go to the hospital"

  • If planning is a problem in your family, try to work out an 'in-case' plan….'in case' we can't go to the match, 'in case' something goes wrong when it is your party.
  • If plans are made well ahead maybe a special relative or friend can be included so that the celebration does not have to be missed if another time cannot be arranged.

"I am always expected to be the responsible one, to give in when there is an argument"

  • It is not good for people to always get their own way and children and young people with disabilities need to learn to consider the needs of others.

A lot of young people who have a brother or sister with a disability grow up to be kind and much loved people because they learn to look after others when they are young. But while you are young it is important for you to be able to do things that a young person can do like hang out with friends and be a person not just a carer.

Young carers

Many young people under 18 do a lot of the care for someone in their family who has a disability.

The things they may have to do include

  • extra house work, like the washing and vacuuming
  • preparing meals for their family on a regular basis
  • do the grocery shopping
  • help shower & dress a family member
  • give medications & treatments to a member of the family.

They may spend a lot of time worrying about their family member and find it hard to concentrate at school. They may miss days of school because they are needed at home on a regular basis to help care for a member of the family who is sick, has a disability or is a frail old person.

It can be very difficult for a young person to juggle caring for a disabled person with school or work commitments. You could find some information and support for your difficult job from Young Carer's organisations such as Carers Australia. Check out the topic 'Carers' in the Young Adult section of this site.

Resources

South Australia

General

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The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Youth Healthline on 1300 13 17 19 (local call cost from anywhere in South Australia).
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