When Our Disability Attitudes Fail Us as Parents

As parents of kids with disabilities, we want our children to be treated with dignity and respect. But what if we as parents don’t model that? I’m going to say something that I suspect will make a lot of people uncomfortable: sometimes we are the ones who treat our children in undignified ways. When I first realized I was guilty of this, it broke me.

Looking back at my own blog entries from years past, I can’t help but notice the language I used and the over-sharing of personal details about my children. It turns out that even as a parent, I need to look at my own disability attitudes. If I don’t give my children dignity and respect, how can I expect others to do that too? If I am to be a role model, what am I communicating about my children? I need to be ever mindful of how my unconscious biases and attitudes impact my children and their community.

In the last few years I’ve been learning about disability attitudes. Because I’m a parent of kids with disabilities, and because I’m aware of other people’s negative attitudes towards disability, I somehow thought I had no problems with my personal disability attitudes. Things changed for me when I got to know adults with disabilities and I began listening to what they had to say. I was not an expert on disability because of my kids, they were the experts because they were the ones who were disabled. A lesson that, quite honestly, was humbling for me.

I’ve confused my girls’ story with my story. I’ve felt entitled to share information about them because of how it made me feel. I’ve disclosed some details that, if shared about me, would make me embarrassed and hurt. I did it all in the name of reaching other parents in similar situations and offering hope and encouragement. It turns out I can still do that without compromising my children’s dignity and respect as human beings.

I parent a child with an intellectual disability, and it is easy for me to fall into the harmful and misinformed mindset that, “She doesn’t understand.” I must always assume she does understand, even if she’s not able to demonstrate it. Because I am operating under this assumption, my words and actions must guard her dignity accordingly. I do understand. And because I do, I have a responsibility to be the one who upholds her basic human dignity before others.

What will I communicate to someone who does not live my life? What mental picture am I planting in their minds when they interact with my child or someone with a similar disability?

My child gains nothing from my over-sharing; instead, she loses. She loses someone looking at her as an equal, she loses her dignity, she loses respect in a world that already struggles to see her as valuable and human.

I understand that if I were to publicly share about bathroom struggles, period issues, meltdowns or bad moments, I would be stripping my daughter of the dignity and respect she deserves. Those things are not for me to share. If they would be humiliating for me or for a typical peer, then because I value her and think of her as someone who deserves dignity and respect, those things need to stay private. If I have a question about those issues, if I need support from other parents, there are private forums or groups to do so.

I didn’t always understand this.

I still get confused and share their stories as if they were mine because of how I feel. But, it is not about me, or other parents, it is about my children. Do I share with their dignity and respect in mind?

I still make mistakes and share more than I need to. I probably still will, but I am learning.

If I want my kids to be treated with dignity and respect, I have to start by being an example. An example in the way I write, in the way I speak, in the way I advocate.

I want my writing to reflect how precious my children are, how much I love them, how much they enrich my life.

I want the hope and encouragement to come from a place of dignity and respect for my kids while I acknowledge our struggles as parents. It is possible, and I believe that type of sharing is more powerful than giving personal details about meltdowns or a list of diagnoses.

I want, above all, to know that when my kids read my words or hear me speak, they’ll know they are safe, because I respect them and treasure their feelings and their dignity.

Always presume competence. As parents, we would do well to take that to heart.

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Thinkstock photo by SJenner13.