It’s Not All About You

Are you a parent of a disabled child? If so, I’m going to need you to forget you’re a parent for the next five minutes or so and just be a person reading a blog. Don’t internalize this until you have finished reading it. Once you have finished, take some deep, relaxing breaths and then repeat these words out loud: it is not about me, it is about my child.

Can you agree to do that? Great, let’s continue…

The next sentence will come as no surprise to anyone who trawls through the various online communities focusing on disabled folks. Tone-policing is a huge issue within the disability community. When reading/hearing disabled people advocating for themselves and their peers, parents & caregivers seem to want to control the manner in which the message is being delivered, rather than giving consideration to the message itself.

Many of these parents/caregivers insist on speaking over the disabled voices; gaslighting, not-like-my-childing, berating, and demanding pity for their frustrations as parents & caregivers, rather than focusing on what could be learned from the adult peers of their children in order to better assist and accommodate those children. So many parents/caregivers would rather build up their egos and put themselves on a pedestal built upon pity and martyrdom, than reflect on the life lessons and experiences of their children’s adult peers.

(Reminder: you’re just someone reading a blog right now.)

Frequently, the non-disabled person will take their ball and go home or – worse – rally fellow parents/caregivers to dump on the person sharing their experiences as a disabled person; something they are electing to share for no reason other than to help the non-disabled learn how to better accommodate the disabled.

If curse words are utilized by a disabled person, the non-curse words are summarily dismissed. If the disabled person challenges a statement made by a parent/caregiver in a civil manner, the challenged party will typically shame the challenger by deploying the walk-in-my-shoes rationale or project feelings of insecurity by other means, neglecting to continue the discussion in a rational manner. If the disabled person comes off as frustrated, they are told not to be so angry and that they’re turning people off to their message.

Think about the last time someone told you that something you experienced wasn’t actually what you know you experienced. Do you remember how hurt you felt? How frustrated you were? How far back into a corner you felt? How invalidated your feelings were? This is how you make disabled advocates feel when you make the conversation about you, rather than them. Did you lash out in your head? With your words? Did you fight back or did you internalize it and move on to avoid further confrontation? Many of us internalize it and move on, but that builds up and when your lived experiences are being shunned with “YEAH, BUT…” statements from parents/caregivers, it eventually evokes assertive and potentially aggressive responses from self-advocates.

Recently, I had a dear friend say something very similar to me, stating you can hold allies accountable, but ripping into well-intended people may make them apathetic to your cause. The friend advised me that advocates should tell allies their efforts are appreciated and then tell them there is an issue with the delivery of the allied advocacy.

My response was this:
Being ripped into is all based on perspective. If someone feels ripped into, that’s on them to deal with… not the person being marginalized and self-advocating. The person advocating really only has a responsibility to accurately present the problem and a solution to that problem. Advocates don’t have to show appreciation or make apologies. That makes the conversation about the person being advocated to, not the person being advocated for.

If an ally (or potential ally) turns away from a “cause” because they feel insulted based on being called out for allying improperly, that’s not the type of ally I’d want around. Forget being weak-willed with regard to allying. Either do or don’t. If an ally’s personal feelings are more important than protecting the person you’re allying… you’re doing it wrong.

Another large problem is parents making meltdowns and other bumps in the road about what they – as parents & caregivers – experience. They vent about their personal frustrations, rather than discussing how to make things easier for the person actually having the meltdown or communication difficulty or whatever seems to be the issue du jour. They treat the symptoms – their vexations with the situation – rather than the cause: their child’s need for accommodations and support. This needs to stop. Behavior is communication; identify why your child is acting the way they are and approach that as the issue to solve.

And before you say, “But Giraffe Party, why is it okay for advocates to be angry and aggressive, but I can’t be? I’m just trying to protect myself/my child!” – stop. You are not the one experiencing life with a disability… you are experiencing life as the parent of a disabled individual. You are not living with a disability, if your child is disabled… you are living with a child – your child – who is disabled.  You are not your child’s voice… you are just the one who can amplify their voice the most. Even if your child is non-verbal, they still have a voice; they are an autonomous being with an individual experience in this world and they can and will communicate that experience in their individual way, however it may be presented.

If parents would step out of their pathologically insular Parent Bubble, they will likely get a good dose of the reality they sorely need to recognize, respect, analyze, and consider as they move forward. Listen to your child’s adult peers. We know what we’re talking about. Disabled advocates have lived through your children’s futures. Ours may not match exactly, but our past is closer to what your child may experience than you’ll ever live and we can provide you with the most valuable insight at no cost  other than your time and your patience. And maybe checking your ego along the way. We, as disabled advocates, do get that you’re not a bad parent and you are trying your best, but we want to help you be better… for your child. It’s not about us. It’s not about you. It’s about your kids.

Remember… deep, relaxing breaths and then repeat these words out loud: it is not about me, it is about my child.