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  • Ailsa, Eileen, Sarah, Sharon, and Carolyn

The Other Side of Disability


I have asked about how disabilities impact on other people.

Here's what they said:

Eileen

“Having a disabled child/young person/adult in the household impacts on many things. Most are nothing more than a mild inconvenience, and you don’t notice them because you care about the person in your life. However, I would say that the main impact is on an adult’s social life. As a mother/carer of a disabled child, your social life is neglected, but then it is for most parents. Babysitters are easy to find while the child is still a baby, unless there are complex health needs. However, as the child grows older, and the care needed becomes more personal or invasive then finding someone able and willing to look after the child is more difficult. You also have to take it into account that an older disabled child may not want a ‘babysitter’ or someone else carrying out personal care. So the social life diminishes. I can’t remember the last time I went out with my husband as a couple – if one is out the other is at home.

Holidays become ever more complex – places to go have to be carefully chosen so that they are accessible, and even with free entry for a carer, still tend to be more expensive than an ordinary family holiday. Working becomes difficult – there has to be someone available to look after the disabled person 24/7, so working even part time presents problems with what hours are available. Carer’s Allowance restricts what you can earn, so hours are restricted that way too. Having said all that, most mothers/carers of disabled people wouldn’t have it any other way.”

Anonymous

“With a special needs child, unless you socialise with others in the same boat then your social life is limited. No one understands what it’s like. Finding a job to fit round the appointments, school complaints etc. is hard. My girls are 17 and 12 and we do have it a lot easier than some people with disabled kids but it’s still hard.

My girls can now be left for an hour or so. That doesn’t give me much free time. Me and hubby can't plan on a date night or anything. We don’t know how the girls will be to plan in advance

Then you get people saying 'but they don’t look autistic'. The whole disability thing in my opinion causes resentment with siblings. They see their sister/brother being allowed to do stuff that they aren’t allowed. Our house is very loud. We have the usual teenage hormones and fighting flying about, but then we have autism too.

Strangers stare. Why wouldn't they? A child is making noises or crawling on the floor.

A normal looking child. Screaming. You get judged a lot, even by family, those that are meant to understand and help.

As a parent you don't see just how much help you give them until you have a very rare few hours or night off. Then it hits you.”

Anonymous

“I find it impacts on your social life in that you have friends who don't have the same responsibilities that you do and don't understand. It means you can't find a job that is flexible enough to manage the many appointments and pick-ups from school so it makes you even more isolated. You can't go out because finding childcare for a teenager who needs a high level of support is impossible.

Going out as a couple is impossible unless you have good family support so it impacts on your relationship. Most of the time you don't see how much it effects your life because this is how it has always been and you know no different. You also have a huge amount of pride when your child achieves something that you never expected. Also going out as a family has to be planned like a military operation so often you just don't bother which isolates you even more.”

Sarah

“It impacts significantly on your career - impossible to work full time, you need an understanding employer who will allow you the flexibility to take your child to hospital appointments etc. Childcare isn't straightforward, you need a special person that will care for and understand your child and the difficulties involved. It impacts on your social life - everything has to revolve around the disabled child and their needs. It impacts on your relationships - partner, other children, relatives, friends. It impacts on your mental health - being a parent is hard enough but being a parent of a disabled child is so much harder. You worry about them more than your other children in some ways, as you worry for their future. They're safe when they're with you, but they won't always be with you.”

Sharon

“It has a huge impact!! Everyday things need much more planning, you need to be inventive and imaginative to make things easier! For example, I cannot physically push two wheelchairs so in order for us to get out and about on our own I have had to adapt a wheel chair and fit a little seat to it. It has an impact on your personal life, friendships can become strained it's hard to hear about other children's milestones sometimes. People don't always know what to say around you either!! work is the hardest thing to get around. Appointments are frequent and often 2-3 days at a time not many employers can put up with the time off needed. Having a child with a disability makes you stronger than you ever thought you could be. It makes you have the fight to get the best for them. This can make it seem like your life is a constant battle which is quite a negative feeling at times and can make you feel unpopular!! There are lots of positives too, I don't take things for granted, I am determined to make each day count and that make me happier than I have been in the past!!”

Carolyn

"I think it is a very different relationship and experience to be a main carer as a friend/carer like I was for my sister-in-law, Leanne. With Leanne I felt my role was to support her mum and to be a special friend to Leanne. I met Leanne when she was 10yrs old and I was 16yrs old (I was a volunteer at the children’s home that Leanne attended for respite care and later also at her school) I met my husband, Brian through my friendship with Leanne. When I first met and befriended Leanne I did not know how to be like a carer and/or friend to someone who had cerebral palsy, I guess I just tried to treat her like a little sister. I remember that I was very keen that Leanne got out of her wheelchair and experienced as much as possible, this sometimes put both Leanne and I at risk as I carried her to the top of slides extra and resulted in lots of laughter and bumps and bruises for Leanne (I guess young carers don’t always understand the risks involved!).

Lastly being a friend to an adult who has a physical disability like another friend of mine who has MS can sometimes be a bit tricky; I sometimes find it difficult to know when to offer help and when to step back and let the person manage on their own. It is a balancing act between being just a friend, showing that you care by wanting to help, and making sure that you respect and do not affect the other person's independence; I find the best solution is to offer to help and then follow your friend’s advice and wishes, what do you think?"


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