Deciding to have a child is one of the most important choices a person can make in life. And while it’s probably one of the more rewarding experiences you can have, it comes with daily struggles, ups and downs, and challenges. When you have a disability, having a child can be even tougher.
Whether or not people with disabilities should have children has previously been a topic of much debate.
There is the camp that questions whether someone who is disabled to the point that they can’t take care of themselves, should bring a child into the world whom they then will not be able to take care of either.
It’s a difficult question to answer.
The other camp argues that children born into a family with one or more disabled parents learn valuable lessons about compassion, responsibility and teamwork at a young age.
It really comes down to the individual circumstance, as it does for a person without a disability choosing to have a child.
The point, however, is not whether a person with a disability should have a child, but that the decision is ultimately theirs to make. And if they do, there need to be supports in place to ensure both the parent and child’s best interests are looked after.
In this blog, we’ll explore the challenges faced by parents living with a disability, the importance of informed decision-making, support networks and resources, and the benefits that a child can get from being raised by a parent with a disability.
Let’s dive in
In Australia, statistics from 2015 showed an estimated 15% of children aged 0-14 were living with one or more parents with a disability, and some 38,900 were providing ongoing informal care for their parent(s) with a disability.
According to Article 23 of the United Nations Convention on the Rights of Persons with Disabilities, people with disabilities have the right to ‘found a family on the basis of free and full consent’, ‘decide freely and responsibly on the number and spacing of their children’, and ‘retain their fertility on an equal basis with others’.
If you’re raising an eyebrow on that last point, that’s likely a reference to the eugenics movement of the early 20th C, where attempts were made to breed out anyone that didn’t fit the ‘ideal’ of the time.
From 1907-1974, over 60,000 people in the US who were considered ‘unfit’, including ethnic and religious minorities, the poor, LGBTQ people, and people with disabilities, were forcibly sterilised.
Thankfully, the laws have long since changed and the movement has been heavily criticised.
Challenges of parenting with a disability
Any parent, whether living with a disability or not, will face struggles in the process of raising another human being. Parenting with a disability comes with some additional challenges.
Some of the biggest challenges faced by parents with a disability are stigmas and prejudice. While it would be less threatening (although still damaging) if these prevailed only at school events or behind closed doors, unfortunately, that prejudice extends to the legal system and the community too.
People question the ability of a person with a disability to take care of a child, provide them with adequate care, guidance and support, and teach them how to navigate the world. This means that parents with a disability are more likely to have their child removed by the state.
The University of NSW states that three in five children with intellectually disabled parents are removed from their care.
Yet, it’s hard to determine if these removals were based on abuse or neglect, or due to a negative bias towards disability and the fact that the parents didn’t have adequate support and resources set up.
The knowledge of this danger of losing their child, however, often deters parents with a disability from seeking those necessary supports in the first place.
Medical knowledge gaps
Another challenge is a lack of understanding and specialisation in the medical field.
A study published by the National Institute of Health interviewing practitioners in the gynaecology/obstetrics field showed barriers for pregnant women with disabilities, including a lack of practitioner training, confidence or willingness to treat a pregnant woman with a disability; a lack of accessible equipment or adequately trained staff; and a lack of scientific evidence on how to treat pregnant women with disabilities.
A parent with a physical disability may be limited in what they can and can’t do.
For example, activities such as physically picking up their child, playing sports with them, or carrying out household tasks may prove difficult for parents with disabilities.
This could be frustrating for the parent as well as the child but could also lead to inventive adaptations, such as using clear verbal instruction instead of physical demonstration, or investing in accessible products like chest harnesses, side-opening cribs and accessible baby baths.
A parent with a cognitive disability may not be able to help a child with their homework, meet their increasingly difficult academic needs, or communicate with them about more complex subjects. This would mean getting the child external help to stay on track academically and developmentally.
A parent with a disability may not be able to guide their child through the complexities of the social world as they get older, and this could result in the child feeling isolated from or out of their depth with their peers.
A parent with a disability may not be able to work full-time or at all and may need to rely on government funding and/or other members of their family for financial support. This could put extra pressure on the parent.
Despite the inherent challenges people with disabilities face when having children, the obstacles are not insurmountable and as most parents will attest, it’s worth it for the love and bond they have with their children. Having the right tools, supports and resources, however, is essential.
The importance of informed decision-making and support
When it comes to disability and child-rearing, there is a vast spectrum of levels and types of disability, so it is difficult to make a blanket generalisation without considering the individual circumstances. Someone with severe cognitive disabilities will face very different challenges to someone with a moderate physical disability or mild psychiatric disability.
This is why informed decision-making is so important.
Is the disability hereditary? What supports are in place and how can a person access them? What government financial support is offered in the case that someone cannot work? Who will offer emotional and practical support when things get tough? What resources are available to ensure all the child’s development needs are met?
In Australia, whether or not you have a disability, you can obtain financial, practical, emotional, and psychological support and resources from your local government and community to raise a happy and healthy child.
The NDIS program provides funding and assists people in finding disability-specific resources for child-rearing. If you have a strong family or friend network, being willing to ask for help is also key to getting through the hard times.
If you’re living with a disability, speaking to a healthcare provider and your NDIS worker, and doing research on the resources available to you, will help you make an informed decision and have a practical plan of how to cope with the new way of life that having a child brings.
Benefits of parenting with a disability
While parenting with a disability may be challenging, there are also some beautiful things that come out of it for both the parent and the child.
While in families without disabilities, the care generally flows from parent to child in a one-way direction, children who grow up with one or more parents with a disability often start taking on caring roles or chores from a young age. This can have a strong positive impact on their development into kind, compassionate and accepting human beings.
Some benefits for children growing up in a home with a parent with a disability may include:
- Developing empathy and compassion for others at a young age
- Learning that it’s okay to be imperfect and not be able to do things at times
- Developing self-sufficiency and responsibility
- Learning adaptability and flexibility
- Having a greater tendency to accept and appreciate differences in others
- Learning perseverance and patience
- Developing healthy attitudes and priorities
- Getting a sense of pride and accomplishment in helping their parent/s
Some benefits for parents with a disability may include:
- Learning adaptability to meet the child’s changing needs
- Learning confidence in their ability to love and care for another
- Coming to terms with and accepting their shortcomings
- Learning to rely on others and ask for help
- Being able to work with their children in a collaborative environment
- Learning to focus on their child’s wellbeing rather than their disability
“Being a Mum gives me a purpose every day and a responsibility of not just looking after myself but also my child. I am looking forward to watching her grow and develop and being responsible for that and the person my child becomes.”- Quote from one of our clients.
Deciding whether to have a child is a basic human right and no one should be denied the fulfilment, depth and joy of that experience because of a disability.
In fact, having a child will likely help you cope better with your disability because they can redirect your focus from your disability to your desire to care for them and give them a happy childhood.
If you do decide to start a family, however, a bit of planning, preparation and research can go a long way to helping you prepare for parenting alongside your disability.