Just because I have a child with Down syndrome, people often say things like:
- “You should become a special educator.”
- “You should work to spread awareness.”
- “You should start an organization for these kids.”
- “You should advocate for children with disabilities.”
- “You should join an NGO and help others too.”
I understand the emotions behind these comments but why is this expected from parents like me?
Yes, I care about inclusion. But we parents are already doing so much….learning, adapting, dealing with appointments, showing up every day for our kids. I didn’t choose this path to become a teacher or an advocate. I didn’t sign up to improve the system, making people aware. It’s already difficult for us to be parent already.
Why does society put this responsibility on parents like me when I am already holding more than anyone can see?
I thought about the reasons, the real reasons why the responsibility to “work for disability rights” often falls on parents of children with disabilities:
Because we lack system support
When schools, spaces like parks, communities don’t do enough for our kids and call themselves “not equipped to teach or care for our kids,” the responsibility naturally falls on us, the parents.
For example, finding glasses, orthotic shoes, even therapies for my child was very difficult. I even took the charge of my child’s speech & occupational therapy because I couldn’t find a therapist who understood her needs.
Ultimately, we parents have to work hard, not because we want to, but because we have no other choice.
Because people prefer their comfort zone
You, I and everyone want inclusion and awareness but often, everyone expect people with disabilities or their families to be the ones doing all the work to raise awareness.
Society wants someone else to do the hard work. Parents like me are expected to talk about Down syndrome and adoption to create awareness because it seems easy.
The truth is, it’s not just our job.
Inclusion should be everyone’s job.
We all should learn, care and speak up for people with disabilities not just the people or the families who are living it every day.
The Glorification of Parents of Disabled Children as ‘Heroes’
How often have you heard, You are a warrior, you’re a hero for raising a child with a disability?
It sounds kind. Right!!
But behind those words is a quiet expectation & sometimes a pressure… like we have to be strong all the time, be grateful and never complain.
It also ignores the hard part…our pain, exhaustion, sadness and efforts. In reality, we’re not looking to be called warriors or heroes. We just want to be seen. We wish to be supported and understood as parents. We are doing the best we can.
Because It’s Always Been This Way
Have you ever noticed that many disability rights groups, books, resources, and brands available today were founded by parents of children with disabilities?
Some special schools & organizations in our country exist because some parents refused to give up on their kids. These parents took the initiative to start an organization.
For years, parents raising children with disabilities have been the true change-makers.
They worked hard, not because it was their job, but because no one else did.
The truth is, Advocacy is important, but parents like me shouldn’t have to carry this burden alone.
Yes, I will try to fight the stigma attached to disability. I will advocate for my child but it’s not my responsibility to change the world around me. My job is to love & support my child.
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