Monday, July 24, 2017

Parenting Kids with Disabilities: Public Interaction

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment 

Dear Parents,

When you bring your child with a disability with you on errands, does it sometimes feel as though they are dressed like this?

Me, age 5, center stage for the kindergarten music program in a top hat, with a whistle around my neck.  I was the ringmaster.
What Do You Do, Dear's Mary Evelyn aptly wrote about the experience from a mother's point of view in the memorable blog post: Want to Know What It's Like to Go Out in Public When Your Child Uses a Wheelchair?

It's a bit like that for the child with a disability, too.  Truth be told, I don't have many memories of being asked about my disability in public when I was small.  It seemed like more of an anomaly to see "the twins" (as me and my sis were called.)  Everyone in our area seemed familiar with us and my family often used strollers or a wagon in lieu of adaptive equipment in public, I didn't tend to draw people's eye for that reason.  (And I was much more curious to know where the cashiers at a given store slept at night, because I was sure they also lived where they were employed.  What if someone needed something in the middle of the night?  Who would help them?)

Perhaps it's where I live, or perhaps it's that people are bolder now, but since I've been an adult it seems that every time I go out, somebody asks if they can pray for me, pities me outright, or asks what happened to me.

Honestly, as an adult, when people react like this?  It's still hard to know what to say.

So I can imagine, it's similarly hard for you.

I read a lot of parent blogs and I know it's really common for you to have strangers ask about your children.  Some of you might feel like it's your duty to educate people, to make the world more informed for your child's sake.  Some of you might tell a joke in response.  Some might ignore the question altogether.

There is no handbook that details what to do or not in these situations and I am certainly not claiming to have all the answers.  But I do have a few suggestions:

1.  Keep in mind that what strangers are asking for is your child's medical information.  And that is, and should be, private.  The general public is not entitled to private information about your child just because they have a disability strangers can see.

2.  Ask yourself, "Would I be comfortable giving a stranger private information about me?"  If the answer is no, don't give it about your child either.

3.  Have a conversation with your child and ask them what they would prefer when people they don't know ask them questions about their disability in public.  I was the type of child who was mortified when people I didn't know asked about my disability.  Especially if it was in a way that implied there was something wrong with me.  But there are kids who would prefer to have their parents say something back, and there are kids who prefer to answer for themselves.  Find out what your child prefers and check in with them often about it.

But wait, you might be thinking.  What if somebody outright pities my kid?  What if they use the baby voice on my 7-year-old?  What if they push my 4-year-old's wheelchair without asking?  What if they ask to pray for my kid?

Just keep in mind that the most important person in any of these interactions is not the stranger you might be compelled to educate.  It's your child.  As bad as you feel, your child feels worse.  (Take it from someone who's had it happen over and over again.)

To experience these things as a child is scary.  It may be tempting to tell your child to "not let it bother you" when someone says or does something invasive.  This is true if a random stranger makes a mean, one-time comment about your driving, for example.  But when the comments and actions are specific to disability, this type of ableism will happen over and over again.  Your child needs to know how to handle it.

How?

Have a plan that your child is comfortable with.  Talk it through with your child (speaking or nonspeaking, always presume competence).  So you will both know what to expect and do if and when your child encounters ableism in public.

Know that it's okay to tell the stranger that used the baby voice on your kid, or asked you what's wrong with your kid that their remarks and/or actions are rude or out of line.  (If you are not comfortable with this, you can try asking a question: "How do you think my child feels hearing you ask that question?")

Know that it's okay to refuse prayer for your child, especially if it's meant specifically to "heal" them of their disability.  We don't need to be fixed or healed.  We are enough.  If it's okay for a stranger to pray for your kid, your kid gets the message that they must need it.  They must not be okay as they are.

Tell your child it's okay to say no, to be loud, or to set the brakes on their wheelchair if someone tries to push it that they don't know.

Let your child talk about it when these things happen.  Reassure them that their actions (whatever they said or didn't say) are okay with you.  Tell them you love them.  That you are proud of them.  If they have friends or role models with disabilities, let them connect with these people in the aftermath of a situation like this.  One of the most affirming things in these situations is to know that we are not alone.

Going out in public with a disability can be daunting, but with information you'll be better prepared and your child will feel safer, knowing they can count on you speak up when someone hurts them.

6 comments:

  1. Love love love LOVE this!!!! So many important points...this needs to be shouted from the rooftops.

    I especially loved this: "Just keep in mind that the most important person in any of these interactions is not the stranger you might be compelled to educate. It's your child." <3 YES.

    Beautifully written.

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    1. OMG it's a K comment! <3 I missed you here! And thank you <3

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  2. Good post. In my life when I was asked about my disability I preferred to control the conversation. In my life if a child asks a disability question I always answer but I am more wary of strangers, my family didn't want me talking to strangers anyway(y'know "stranger danger" with kids etc) My general rule is to always to disclose to teachers,friends,employers,coworkers ASAP at the beginning of our interactions as my needs for navigation and time management due to CP come up quickly and not disclosing creates big problems if I spend time with a person on a regular basis. Strangers however are not worth it. I came up with a rather clever way of getting around the "praying incidents" by saying something like "I appreciate your prayers but could you pray for me to help me deal with [insert non disability related life event] or for my friend/family member who is going through [serious life event] instead??" This lets them know we have non disability related life concerns and makes them think. The exception to this would be the few unfortunate times when my disabled friends almost died of medical complications and I prayed for them to recover so I think that kind of disability/healing prayer is okay and much needed. I bring up the privacy issue in my new film too.

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    1. For sure. Everyone is different and has different preferences and ways of dealing with ableism.

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    2. Yes, indeed. That's why people should respect individual preferences and not assume all disabled people react the same way. I hate when certain activists make statements that imply all disabled feel one particular way.

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    3. Everybody's an individual. That's why I make sure to say these are only suggestions and I don't speak for everyone.

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