Anita and Barry are parents to children aged 21, 25 and 28 years. Anita has been in a wheelchair since her teens.
‘I’ve been in a wheelchair since I had a car accident when I was 16. I’d always wanted to be a mother and a year after I got married, I had my first son.
‘When the children were young I got by through designing and modifying things to suit my needs. When they were babies I had them on a sheepskin with two wooden handles so I could pick them up. When they started crawling they’d wear a little harness or I’d dress them in overalls. I had a change table and bassinette modified to suit my chair, and used a bath that supported the babies well.
‘The hardest part, when the children were young, was the isolation. We were living in a semi-rural area and I was very much confined to the house while my husband worked. Getting outside was difficult, so I couldn’t play with the children in the garden as much as I’d have liked – I had to rely on my mum a bit for that. Even though I drive, getting to the shops and leaving the house is quite an ordeal when you’ve got to put the kids in the car and put your chair in too. So I tended to stay at home and because of that I had a really solid routine. I think that helped a lot. But it was tiring. Lifting nappy buckets and all those things are very tiring when you’re in a wheelchair.
‘But it wasn’t just physical isolation. I felt a lot of frustration and could get depressed when I just couldn’t do the things I wanted to do because I was so isolated and tired. I was lucky because I had a supportive husband, and when we went out he had to change the children because I didn’t have the special table. But this was frustrating too.
‘My approach has always been that I’m a mother before I’m a person with disability. I tried really hard to be part of the children’s lives. I went on the kindergarten committee to make the kindergarten wheelchair accessible, and I did fruit duty and reading. I’ve done spinal injury awareness talks at the children’s schools and have been as much a part of my children’s recreational activities as I could – the calisthenics committee, and racing around the three phases of dressage, show jumping and cross-country in my three-wheel motorbike. Now one son is an Olympic athlete and my daughter is getting there in equestrian events.’
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Parenting with physical disability at a glance
- One in six children aged 0-14 years live with a parent with disability.
- There are 380 000 Australian families with at least one parent with disability.
- Overall, more single parents rate their own health as ‘poor’ compared to parents in couple families.
Challenges of parenting with physical disability
Parents with physical disability can still experience a fairly high level of prejudice. Some people believe that people with disability won’t make good parents, or that their children will be subject to a substandard family environment and level of parenting.
For many years this has stopped parents with disability from accessing support services because they’re frightened their children will be removed, or that their ability to be a good parent will be questioned. But there's no evidence to support the view that having physical disability will result in a reduced ability to parent.
Studies have actually indicated that, in most cases, children of these parents can develop skills and qualities that are absent in other children. These might come from developing a deeper understanding of difficulties and hardship, learning to give and take pleasure in helping with family chores, and respecting and understanding responsibility.
Because of their disability and the ways their families adapt, parents with disability can actually raise children who have a better insight into life and caring than many other children of the same age.
In the past, people have believed that disability makes it hard to get by in society – that it’s difficult to get an education or a job or have a family. The opposite view sees society failing to meet the needs of people with disability. These needs include the desire and the right to have a family.
Society fails people with disability by not providing the right kinds of services and facilities in the community to make these goals achievable.
A lack of services makes it hard for parents with disability to cope. Typically, these parents deal with undue hardship for the following reasons:
- There’s not enough respite or home help, and there’s a lack of support services within the community to meet their day-to-day needs.
- People working in the care sector don’t understand the needs of parents with disability.
- Family relationships are interrupted when children are removed or cared for by others when their parents are hospitalised, ill or having difficulty.
Many people with moderate or severe disabilities have trouble holding down a job or simply getting through day-to-day activities, and this can make being a parent even more difficult. High rates of unemployment and poverty and social isolation – rather than the disability itself – lead to difficulties with raising children. These strains can also cause tension between parents.
Care and discipline
Some of the challenges parents might face in hands-on child rearing are related to their physical abilities.
If parents are restricted in movement in the upper body, they might have difficulty holding a child without help or carrying out general care duties, such as feeding and cleaning. If parents are in a wheelchair, they might be limited in how much toddler-chasing or tantrum-soothing they can do. Some parents’ energy levels are affected, making the already exhausting job of raising a child even more tiring.
To compensate, many parents with physical disability rely more heavily on verbal communication. This type of communication and instruction can start at an early age. Children understand they can learn to feel safe if they listen to their parents and do what they say. As children grow older, reasoning and explanation become the main tools for discipline.
Children in a caring role
Some people worry that children take on too much responsibility in physically caring for their parents. This has long been assumed to have a bad influence on the way a child is reared, because it might deny a child the regular experiences of childhood.
But many studies show that children of disabled parents aren’t disadvantaged by helping to care for their parents. In fact, it’s suggested that learning about responsibility, care and contribution helps with the development of good self-esteem because children experience a sense of worth from their role. When children have too much responsibility, it’s usually because the family isn’t properly supported by community services.