Tuesday, September 22, 2015

What You Need to Know About Blogging About Your Disabled Kids

It's only been a couple of years since I began my journey as a disability advocate, and in those two years, my eyes have been opened to a big problem: Parents crossing the line when blogging about their disabled kids.

My only saving grace from this, personally, is that the internet didn't exist in my house growing up until I was 17.  So, for nearly all of my childhood, even the possibility of sharing about myself or my sister to the masses was simply not an option.  Add to that my mom's reluctance to even be tagged in pictures on Facebook, much less share family's personal business with anyone outside the family and my grandma only ever complaining about very minor things unrelated to my sis or I in a private diary, I have been in the clear.  The only sharing about me is done by me.  

Other disabled people, though?  Not so lucky.

Now, I know what you might be thinking:  "What line?  Where is it?  No one told me there was a line!"

Well, as the previous acronym used in What You Need to Know About Pushing Someone's Wheelchair Without Permission was so useful, here is another one to consider before you blog about more personal aspects of your disabled child's life:  CARE.

I know parent-of blogs are for other parents of disabled kids, and they are focused on how your child's disability impacts you.  However, for these guidelines, parents will need to step aside and allow the disabled person to be your focus.

C - Consent
verb
  1. 1.
    give permission for something to happen.

Did the disabled person in your life give consent to have this personal information shared with the wider world? If you are writing about us, let us read it.  Let us tell you whether or not we are comfortable with you sharing it with strangers or not.  Keep in mind, very small children cannot consent, and disabled people with intellectual or other developmental disabilities may not be able to consent in a way that is readily understood.  In this case, even more caution is needed.  Think about yourself at a similar age, and what you're about to share with the whole electronic world.  

A - Apt

adjective
  1. 1.
    appropriate or suitable in the circumstances.

Is your blog the appropriate place to share that your 18-year-old pees in the bathtub?  Or that your 12-year-old holds their bowels until they have an accident because it's the only thing they feel able to be in control of?  Nope.  Probably best to save those types of things for private journals, or personal messages to a family member or a close friend who knows you and your circumstances very well.  Is your blog the appropriate venue to share that you feel like ending not only your life, but your 15-year-old's as well, because their behavior is just too difficult?  That would be one for your therapist's office.  (Seriously, if you feel like this, make an appointment with your mental health professional ASAP.  Don't blog about it.)

R - Respectful


verb
  1. 1.
    to act in a way which shows that you are aware of (someone's rights, wishes, etc.)

Ask yourself, does this post, or this blog, respect my child and their dignity?  Does it respect my child's community?  Posts that detail a doctor offering an abortion after a baby's in utero diagnosis - and detailing how - after that moment you did not feel you were carrying a baby, only a diagnosis?  These are crushing to read as a disabled adult in your child's community.  Posts, videos, or pictures detailing your child's autistic meltdown or shutdown?  So disrespectful.  Pictures of your children in vulnerable positions (distressed or in pain after a surgery?)  No.  A photo of your school age child or teenager in just a diaper, or bra and undies?  Unacceptable.  Posts about how it's like your NICU baby (who is alive, despite medical complications and premature birth) died because they are not home with the family?  Break my heart, and I hope that child never finds that post when they grow up...  

E - Edifying


adjective
  1. 1.  to teach (someone) in a way that improves the mind or character.

Write your blog with your child's dignity, personhood and self esteem at the forefront of your mind.  To help with this, let me give you an example of a blog post from a parent's perspective that is not meant to edify:

Sometimes, being a special needs parent is really hard.

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

But the kids were barely gone an hour before the phone rang.  It was my daughters' school.  One of my twins (Jessie, who's CP is more severe) had an accident right after getting to school.  She's been toilet trained reliably since she was a toddler, so this caught me off guard.  It made me so frustrated and upset.  I see all the other 9-year-olds and I know none of them are still having incontinence issues, especially at school.  I hid my frustration...and let's face it, my anger (none of the other moms in the neighborhood have to deal with this!  Their 9 year olds are playing sports, going to the park and doing all the things my kid can't do.)

She was so embarrassed - almost crying, but kept it together - and was very quiet the whole way home.  She didn't say much to me as I helped her out of her dirty clothes and into the tub.  I don't think she's sick, so that's something.  I'll close with this picture of her all cleaned up and watching some TV with her little brother.  Still a little down but always inspiring.  I can't imagine living with a disability every day like she does.  I don't think I'd make it.  Sometimes I feel so guilty she can't have a normal life, though.

Please tell me some other CP-moms relate to this...

...versus one that is edifying:

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

Unfortunately, the girls' school called about an hour after the bus dropped them off.  Jessie had to be picked up.  No details, because her privacy is non-negotiable.  Suffice it to say, she had a rough morning, and is home now, trying to unwind a bit and watching some cartoons with her little brother.

Sometimes, being a parent is hard.  I'm not sure if today was a reality check or if it was just a glitch, but it's tough to see any of my kids having a hard time.  Let's face it, it's tough to be a mom some days, and to know what to do.  It's hard to have to drop everything, when I really hoped to get a shower and maybe catch a few minutes of Kelly and Michael, in between loads of laundry.

Guess it'll have to sit in the DVR a while until life calms down...

I sincerely hope this is something parents take on board and feel free to use as a resource when blogging about your disabled kids.  Until next time, here's my face, bidding you a serious farewell:



Friends, what is something that your parents or caregivers have done that let you know they care?  Sound off in the comments!

8 comments:

  1. Thank you very much for this post. I am a parent blogger and I really appreciated reading your perspective. I'm saving this so I can refer to it moving forward with future posts. All of it was helpful but the examples of the edifying post vs non edifying post was extremely impactful for me. Thank you for writing this.

    ReplyDelete
  2. Jody, thank YOU for being open to it! I'm glad to know you're finding some of these entries helpful.

    ReplyDelete
  3. Okay so I actually am autistic (amongst other things - OCD and PPD for the most part) and I cannot count the number of articles I've seen from "autism parents" (I use the term only to describe the self-righteous sort that you briefly detail here who usually find my use if identity-first language "insulting", NOT all parents of autistic people) that are more or less exactly what you've said here to not do.
    Usually as a result I would expect an article with this title to be, to put it as kindly as possible, frustrating.

    Most communities I'm part of are very much driven by autistic people and parents don't get much of a look in negate of their attitude but this is the most respectful article I've seen. Basically, we need more people like you.

    ReplyDelete
    Replies
    1. Ollie, thank you so much, that means a lot!

      Delete
  4. It is interesting to read your opinion. I blog about my life as a carer but have purposefully kept images of my daughter clear from the website for the reasons you mentioned - it is her life. And whilst it is my life looking after her and it is hard, I try to not reveal too much about her in a way that exposes her. If that makes sense. I really wanted to help others with my site - provide helpful info and help myself by verbalising a lot of my thoughts. As I say interesting to read your thoughts

    ReplyDelete
    Replies
    1. Thanks for reading and thank you for being conscious of how (over) sharing about your child is damaging. It is possible to share your story while respectfully leaving her story for her to share when or if she wants to.

      Delete
  5. My mom(who is abled bodied) and I were talking about the lack of privacy for disabled kids. She had seen the various posts by parents of disabled and she said "what if these kids get jobs and their boss sees this. How embarrassing. I would never dream of violating your privacy that way." Then I showed her your post and she said "Spot on!"

    ReplyDelete
    Replies
    1. I'm glad your mom would never violate your privacy in this way. So important.

      Delete