In case you haven’t noticed, I am trying to be more stealth with using B-man’s real name (and face!) these days. I’m not quite used to this, as it feels really awkward, kind of like “Hi I’m Jenny but people call me J-Wow” awkward. I promise, I have at least a few good reasons for this change, and even a few more good reasons for the other changes to the site.
I noticed, with the help of some super-awesome bloggers, that everything I was doing was wrong.
Wait, wha? (Gimme a sec. I’m still picturing that scene from Jersey Shore.)
I used to have a page with no fewer than 3000 words (maybe more?) dedicated to explaining, in detail, his entire medical history. I included details of his oxygen and BiPAP settings, how many bones he’s broken, and the pièce de résistance: exactly which chromosomes are affected by his microdeletion. I’m surprised I didn’t draw a strand by strand caricature of his DNA.
I think the easiest explanation of why I did this was the need to PROVE to the world that 1) his condition is very, very super serious, and 2) that we have had a rough time as a family. I realize now that splattering his personal medical information on the internet isn’t the best idea. Anyone could Google his name and find out stuff about him, stuff that only our inner circle of friends, family, and doctors should know.
The issue of bloggers who are parents of disabled/medically fragile children “oversharing” is not a new one, but it came into my world just over a month ago. In a nutshell, the hashtag #crippingthemighty was created, and disabled bloggers started speaking out against the disability-themed site The Mighty. In addition to finding the high ratio of parents/advocates to actual disabled bloggers problematic, they pointed out many other ableist ideologies insidiously woven throughout its pages. (Full disclosure: I’ve written for them, and I still plan on submitting posts in the future, but that’s a whole entire post for another time). Some of these problems include: perpetuation of inspiration porn, not paying disabled writers, the use of ableist language, and parents framing their child’s disability/medical issues as a burden.
This last problem really hits me where it hurts. In previous posts, I have used negative language to describe aspects of Bucky’s condition, admittedly out of an initial desire to simply connect with others like me. I’ve complained about his leg braces and lengthy hospital appointments. I’ve demonstrated, repeatedly, an unhealthy level of resistance to accepting who he is.
I’m not sure how he’s going to interpret the things I’ve written about him in the past, but going forward, I will be making sure that everything I write is framed in at least a neutral light. I had underestimated the power of words. Suffers from, afflicted, painful, diseased, delayed. I’m not saying I will never use them again. I’m simply more respectful of their immense power when woven into a disability-related story.
Don’t get me wrong – it’s not all going to be sunshine and roses. I still plan to be honest. I still have many stories to tell. I just want my son to eventually read everything I’ve written and actually, you know, kind of like the stuff I’ve put out there.
I think it’s really important to listen to the disabled (adult) advocates who have come forward and criticized the way we (the parents) are writing. They are the ones currently identifying and confronting ableism, a role that my son will one day fulfill. I am thankful that they continue to write.
Here are some of my favourite #crippingthemighty posts, if you’re interested. (AND YOU SHOULD BE INTERESTED AND READ THESE OR ELSE I MIGHT NOT POST THAT CUTE VIDEO OF MY KID SINGING ‘HOTLINE BLING.’)
http://carlyfindlay.blogspot.ca/2015/12/the-problems-with-mighty-and-my.html
http://thatcrazycrippledchick.blogspot.ca/2015/12/an-open-letter-to-mighty.html
http://thesqueakywheelchair.blogspot.ca/2016/01/my-take-on-mighty-and-ethical.html
Mother of Bones 
Thank you for listening and really hearing. It’s a big thing, to step outside your own story and embrace others, particularly when you have such a stake in the story. But I believe you have done the right thing here. It’s a fine line, sometimes, to be both honest and respectful, but it’s one we need people to model in our new, very public world and lives. Brava to you and best of everything to your family.
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This is really great. Too often the response to criticism on privacy and on how parents talk about their disabled children by PwD is to lash out- so glad you are being a good example here!
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You’re not The Mighty. You’re you, and you’re always clear you are expressing your experience and feelings. There’s no wrong way to do that, and I bristle to learn there are bloggers out there shaming you into thinking there is. Your writing is clear and honest and reaches beyond your circumstances. I hope you will continue to share your world as it is for you. If anything, you will give your son the courage to do the same.
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No shaming over here! Only listening and learning. Still happily writing…
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Hi Jennifer,
As a disabled adult I don’t think it is in anyway wrong for you to discuss the aspects of your son’s condition that are difficult and how they are difficult for you. My parents, mostly my mom had to deal with a lot with me during my childhood. The leg braces were a constant, painful battle for the both of us. They were ugly, painful, inconvinent, and expensive. There is nothing positive about that and I don’t think it needs to have a positive or neutral wash put on it. It’s not insulting to say if you dislike that your child has to experience certain things or the effects those experiences have on you. Disability can be good, bad, funny, ugly, and embarrassing. I think the most respectful thing to do is acknowledge the different facets of the disability experience honestly.
When I was little my mom picked me up and starting carrying me in the store. My shoe and leg brace fell off. I started yelling wait mom wait my leg fell off! Of course everyone started looking and my mom was laughing so hard.
Those same braces causes hours and hours of arguments, screaming, crying and begging that my mom had to deal with. If she had had the Internet and felt the need to share her feelings about that I would be totally fine with that.
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I think that story is a great example of one that could be shared appropriately. It’s funny. And when written with a bit of finesse and care, it would make for a great blog post.
It’s a tricky thing, writing about our lives as parents. Some people do it really, really well, and some, well, not so much. This isn’t really even about oversharing anymore; the word “overshare” almost oversimplifies the problem. It’s about tact and discretion and truly thinking about the words and stories we write.
Parents need to think about the bigger picture. I read so many posts from parent-advocates and the first thing I ask myself is, What’s the point? Where’s the meat and potatoes here? Is this an actual story? This can’t be a story. I know that many write because they need to connect and they need an outlet. But is it REALLY doing the disability community any good if these writers continue to perpetuate ableist ideas, even going so far as to deny that ableism exists? Many parents have decided to continue using the phrase “special needs” to describe their kids, even though disabled adults have long ago shunned this description, for very good reasons.
I say, let’s listen. Keep writing, but do it well, and do it with thought and consideration for the community you are advocating for.
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Wait, “special needs” is out? I had no idea – I don’t always follow the trends in the disability community/ies, and I didn’t realize it wasn’t the preferred term. I had always liked it in educational settings for its inclusion of kids who had specific medical needs (like peanut allergy) as well as developmental disabilities or physical disabilities, but of course if the actual people it describes are opposed to it, I’ll drop it. Can you tell me, though, what the preferred term is now? I feel like “disabled” is inaccurate for my autistic kid, and I don’t know of another inclusive term to describe him along with the other kids in his class.
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Hi,
I publish an Australian website on disability news and opinion at:
https://mydisabilitymatters.com.au
and was wondering if it might be okay to republish this article and any other relevant ones on our website, with appropriate credit and a link back of course.
It would help spread your work and gain a wider audience for you.
Hope we can work together and I am quite happy to publish other articles you may have written that aren’t on your blog also.
Thanks,
Dale.
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Reblogged this on Spectrum Perspectives and commented:
THIS – exactly, exactly this.
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I’m a disabled adult with a blog, and I congratulate you on really getting it. So many parents I talk to think that disabled people are trying to silence their voices and/or their way of being involved with the disability community when we urge caution and respect, and no one I know would actually do that. Instead, our message is exactly as you’ve described it: write, but write with caution and with the same respect you would give a nondisabled person. Because we’re people, just like the nondisabled, and we’re entitled to the same dignity. Well done, ma’am; I hope you keep it up.
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Reblogged this on Autism Mom and commented:
This is a good read for everyone – please enjoy it.
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Excellent post. Reblogged on http://www.Autism-Mom.com
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Reblogged this on Rambling Justice.
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I understand what you are saying…but honestly until reading your blog and some others it would not have occurred to me to step in and offer help or feel comfortable in approaching a family with a disabled child. I raise service dogs and always have a puppy with me. I LOVE sharing them with others but don’t want to single anyone out! I’m always SO worried about “offending” someone or the like that I tend to avoid interactions unless I am the one approached. I followed one of the links in your post and read about the bathroom incident–yes it was TMI in one respect but in another it was a call for all of us to be more sensitive to the needs of others. I am now FAR more likely to offer help, to not judge, to approach, etc due to some of these “oversharing” blogs I’ve read. SO it’s not all bad.
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