“Some days, I grieve the life I thought I’d have. This doesn’t mean I love my child any less; it just means my life isn’t quite what I thought it would be.”
I shared this on Instagram and a stranger commented with her thoughts.
For context, this post was about how difficult/sad/unnerving it is to see your child struggling. Avery had lost a lot of speech and some of the skills she had previously mastered. We were awaiting test results. We were scared and just wanted to get to the bottom of what was going on with her medically. I wrote that Avery had “regressed” in some areas and this person had an issue with that.
Disgruntled Stranger: “I think it’s a human feeling to have, but I think containing it to the appropriate spaces is important. This is falling into ableism. You are not entitled to a healthy child. Or the type of child that you wanted. I don’t think it’s beneficial to seek sympathy for your plight. Kids with disabilities become adults with disabilities and it’s downright offensive and insulting when I see parents talk about their children like they’re somehow martyring themselves. Deciding to fill the role of mother is a challenge universally. You shouldn’t get brownie points for sticking to your commitment.”
Her comment stung. I felt equal parts shame and defensive. Once I had collected myself, this was my reply (plus the rest of our conversation).
Lisa Thornbury: “I hear what you’re saying. I actually talked about this on a podcast episode—about how I feel guilty for letting ableism creep into my parenting. I love my daughter for exactly who she is. She’s a joy to be around. It’s just difficult to watch her regress. No brownie points required or desired. I just want her to be healthy and safe.”
Disgruntled Stranger: “I totally respect your experience and your feelings. But I want to share with you that I was raised by parents that made me terrified of going backwards. And it has really caused me some issues. I don’t know your specific situation, but it might be worth looking at the fact that every life experience is beautiful. And we learn from everything. You don’t necessarily know what her mission was coming here. It’s better to assume she’s doing a great job. But it’s not that I don’t feel for you. Life is hard for everybody. We’re always learning.”
Lisa Thornbury: “Always learning for sure. I appreciate you commenting. I’ve learned so much from other parents and in particular, disabled adults who’ve graciously shared their experiences. I can see how me saying that Avery has “regressed” sounds negative and ableist. I always kind of assume that people in this space know us and understand Avery’s medical history. We’re trying to rule out nocturnal seizures and other things as the cause for her “zoning out” and losing speech etc. It’s just not typical for her so you know, just trying to make sure she’s the happiest and healthiest version of herself.”
By listening and responding respectfully, I let her know she was heard. This helped to de-escalate the emotion. I didn’t try to one-up her or scold in any way. We also took the conversation offline, to DMs. I thanked her for her thoughtful comment and for the opportunity for me to reexamine my perspective through her lens. And to further explain the purpose or intent for my post.
She responded with a few more points by DM and ended with: “I understand where you were coming from, it’s just a fine line. Thank you for the dialogue and openness.”
I was quite pleased with the whole exchange. Considering how angry and defensive I was when I first read her comment, this was the best case scenario in a situation like this.
But this isn’t always the case. Some people aren’t interested in creating a dialogue. They’re only looking for a fight. If people are unrelentingly rude or unwilling to listen, instead of pursuing the conversation, I disengage or block them. I won’t waste my time fighting with people who aren’t willing to be open and respectful.
How do YOU handle situations like this?
The post Disagreeing About Disability Parenting first appeared on aVERY Bright Life.
