Something that has been skittering about my mind since seeing a campaign on Twitter about how people perceive parents of children with disabilities. One tweet in particular and the feelings it generated has stuck. It stated that parents of children with disabilities need to stop calling themselves ‘heroes’. It went on to say that anything a parent carer does is just ‘good parenting’. While I have never actually seen a parent of a child with a disability waxing lyrical about how heroic they are, I am presuming that the tweet was generated from an experience like this. Or was it? In my experience, it is normally those who have no experience of disability that label me as some fictional otherworldly creature.
There are two important facets to this statement, that need discussing, alongside the serious trend from some people that parents of children with disabilities shouldn’t discuss the challenges they face. If only our society had no challenges for families like mine, then we could all skip merrily on our way. Yet, the opposite is true. The barriers we face to getting support are immense and asking us to be silent on the matter is abhorrent.
Firstly, it is a common practice that parents who have a child with a disability are praised for raising their child. This makes me incredibly uncomfortable. I find it astounding that I should be praised for raising my own child. If you look a little deeper into why these comments are made you can see a thread of prejudice. It’s difficult to put into words, but it centers around the idea that people with disabilities are not an integral part of society. That it’s something unusual and out of the ordinary to have a disabled child. I don’t like that. My daughter belongs here and anything that suggests she shouldn’t is nauseating.
Alongside this attitude, we are often lauded as having ‘superpowers’. When parents like me talk about various aspects of our role, for example, staying awake most nights to check your daughter’s oxygen saturation levels or learning a new language to communicate with your child, we are described as ‘amazing’ or similar. This is such a complex issue.
I have often felt like I have made other mothers uncomfortable in group situations. Once in particular I remember a woman who used to actually refer to herself as ‘Mama’ flamboyantly discussing her ‘Mummy guilt’ and how she didn’t create messy play opportunities at home. I chipped in saying yes I did often feel guilty. This week it was because I hadn’t taught myself the amount of Makaton signs I needed to and that would impact on my daughter’s vocabulary. I was met with silence. None of them had a clue about what I was talking about. So they fall back on ‘I think it’s amazing that you do that’ and move on. This isolates us. It disregards the aspects of raising our child that we struggle with and discourages us from being able to seek the support we need.
Yes we struggle, because we’re not superhuman. We’re not superheroes.
Rather than engaging in a conversation with parents about the challenges they face, offering support and discussing possible solutions, it is easier not to address the issues present. The uncomfortable feeling generated by discussing the barriers our society has firmly in place to prevent inclusion is swept aside by creating an illusion that parents of children with disabilities are somehow otherworldly. Have special powers. By making us less real, they can distance themselves from the knowledge that we live in a country and culture that is failing disabled members of its society across the board. And facing that often means you may have to address an element of your own life or your own thinking.
Secondly, the challenges and barriers we face are real and many. One aspect of that tweet that made me particularly uncomfortable was the lack of understanding of the sheer amount of issues parents of disabled children face. Sweeping aside everything we do as just ‘parenting’ is dangerous and irresponsible. It seeks to suggest we shouldn’t talk about the challenges we face. And a huge amount of these challenges are created by our ableist society, our government, prejudice and discrimination. Would you class having to do the following as good parenting? Or would you stand with us, as an ally and say ‘No. These are not things parents should have to do. They should not have to fight for their child’s basic human rights.’
Is staying awake for 5 days, holding an oxygen mask on your daughter’s face because healthcare staff repeatedly fail her, as a result of their embedded prejudice, just ‘parenting’? Remember, I’m not a superhero. I get tired too. So tired in fact I pass out at that level of exhaustion. Disregarding me as just being a mother, or calling me a hero, does not help.
How about you get angry that my daughter is treated like this, look at the reasons why and start doing something to change this?
Is having to negotiate the minefield of the EHCP process, being faced with outright discrimination, denial of you child an education and every barrier humanly possible to prevent them from accessing their right to an education, just ‘parenting’? We are forced to learn how to write EHCPs. We are forced to learn how to speak in legal terms. We are forced to spend months, sometimes years fighting to get our child the correct support to enable them to attend school. Is this just ‘parenting’? And, no, I’m not ‘amazing’ for doing it. I’m stressed, hurting, frightened and exhausted from the battle to get my daughter what is hers by law. A school place.
Perhaps you could get angry about it too? Ask yourself why disabled children are denied the funding they need to access an education. Understand what families are put through trying to defend their child’s human rights. And do something to help us change the way things are.
These are just two examples. Other families will have more, and most likely more extreme situations too.
To sum up, disregarding everything we are forced to do as a result of prejudice and discrimination as just ‘parenting’ is a dangerous statement to make. It seeks to normalise the way disabled children are treated in this country. It suggests that this treatment is acceptable and standard. The situations parents find themself in and have to fight to get out are a product of a discriminatory society and toxic culture against disabled people. We shouldn’t have to fight for healthcare, education or even our child’s right to life. And if you class this as just ‘parenting’ then you are part of the problem. Similarly, if you call us ‘heroes’ or ‘inspirational’ you’re doing exactly the same. The challenges are real. We are real.
So could we, perhaps, all just acknowledge that parents of disabled children are faced with a plethora of unacceptable and impossible situations that they have no choice but to deal with. These situations need to change. They don’t even need to occur. If children with disabilities were treated as equals. If their human rights were respected. If prejudice was a thing of the past. Then perhaps we could get on with just ‘parenting’.
We could chat about teething rather than tribunals.
We could talk about days out with the kids rather than diagnostic overshadowing.
We could just be parents.