Have you ever felt that you are playing a role that somehow society has imposed on you and you were not able to reject because it doesn’t feel right to go against the odds, or maybe because you feel that deep in your heart, it can or it needs to be true to make sense of a circumstance you cannot process yet? This is not a research-based article but one focuses on my personal anecdote when it comes to the effect of idealization in the lives of parents of children with disabilities from the mental health perspective.
This is not the first time I talk about this and will probably not be the last, as my children are now 17 and 14 years old, and there is much more to come now that they are growing up and soon become adults with disabilities. Every stage has its own challenges, and I feel this applies to all parents and all children. However, for children with disabilities and their families, there is something that other families may not experience directly or with so much emphasis, and it’s society’s tendency to label and define the roles of parents by giving them superpowers. Also, by pushing them to believe that they are somehow superior or are supposed to change the world as chosen beings that must deal with “disability” and all the sacrifices that come along with raising a child with one.
Sadly, the beginning when your child is first diagnosed and sometimes, a longer time than that is confusing. We parents don’t know what to expect, and still confused and immersed in our own prejudices, we want to believe there is a major reason behind our
I am aware these are things not everyone wants to hear or may sound harsh to many, but if they are not true, why do they make us feel uncomfortable?
I have talked about this with many parents, families, and professionals, and many times I have heard them say, “it’s just normal to start like this and it doesn’t make sense to take away this from families as they will find out eventually and grow stronger as they get hit by reality.” I agree it’s a process but I am also aware is not one everyone handles the same. And I am speaking for myself. It took me a couple of years to realize the world is not an easy place when you raise children with disabilities. It took me years to recognize the difference between pity and honesty. It still surprises me deeply to realize that many people I have known forever, have chosen to stick to prejudice out of comfort, and while having the resources in front of them, they have made the choice to disable people instead of enabling a change in their mindset.
But how does all this connect to the conversation about mental health? Well, to me, by pushing parents of children with disabilities to believe that they have superpowers or that they are more “special” than the rest, we are putting them in a very vulnerable position in which they feel the need to fulfill our expectations to demonstrate that for being worth it and have a value, they have to do something else or have a superpower of some kind. What they don’t realize many times is the burden these unachievable expectations put on their mental health. We push them to believe they have to be more grateful, patient and evolved than the rest. However, they are the ones facing endless days at hospitals, doctors’ appointments, and therapies. They are the ones fighting constantly for their children’s rights to be respected, at the school system, at the healthcare system, at the community park, when trying to enroll them in dance, karate, or art classes and all they hear is “we don’t have the right staff or we don’t know how to teach your child.” But we want them to stay cool, happy, and somehow, to believe that they can handle injustice better than the rest. All this is because they have a child with a disability and they are supposed to be stronger or magically overcome the nature of these situations that would drive anyone crazy.
By taking away their right to be humans, to be reactive, to explode, to cry, and to curse, if needed, we are not helping them at all and we are not changing reality. All the opposite, we are depriving them of their human right to express their emotions like any other parent would do. There is nothing special about having to call more than a dozen doctors before you find one that gives you a light of hope because he can see your child instead of the disability. There is nothing magical about having to work full-time and in between have to write emails and take phone calls, and contact agencies and organizations to find hope and reassurance when you know in your heart your child deserves an opportunity in a system that has already decided is not an option.
There are days in which even when you try hard to smile and believe, you still feel lost, disappointed, and depressed. And it’s real, at least in my case, I can look at my kids to realize that everything is worth it and that tomorrow is going to be a better day. But what about those who are not me and are in a different position. Those who don’t have job stability, those who can hardly afford to put food on the table, those who deal with disabilities on their own or just don’t have the mental health strength to self-regulate and believe there is hope regardless.
Most probably they revise in their minds all the labels that they have been assigned, and most probably they feel broken or confused because it just doesn’t make sense to feel so human and so vulnerable.. but people keep pushing, but can they keep playing that game? Are we helping or are we hurting them? Something to think about.
So instead of trying to paint a fantasy or perpetuate the prejudices that push parents to believe they have superpowers, what about landing in reality, to commit to being part of the change by doing our part in the pursuit of real inclusion and equity. What about educating ourselves by listening to what self-advocates have to say? What about doing random acts of kindness that don’t look for admiration or recognition but instead are focus on opening doors for those who still struggle to fit? What about educating our kids so they see differences as a normal expression of diversity instead of sending them to be saviors or raising them to believe that the only way to contribute to the life of a peer with a disability is to protect or help him, instead of just treating him like an equal?
There are so many things we can do to change the game when we realize how much hurt pity and condescendence can cause. To create just and functional societies we need to begin by changing our own perceptions to move from the illusion of abled body superiority to the realization of diversity as a dignified expression of life. And then and only then, we are going to be really making a positive difference that will help people with disabilities to live freely and to their full potential.
