What is this blog for anyway?

Weblog (noun) a personal website on which someone regularly records their opinions or experiences (Compact Oxford English Dictionary 2005; boldface mine).

Okay so I haven’t bought a dictionary for ten years (who needs one nowadays?) but this definition seems pretty sound to me. When I started my blog I was under the impression it was basically a kind of online diary – albeit a public one. A personal view of the world, often started – like mine – in response to a life-changing event. Writing this blog helps me to clarify my thoughts and feelings; it gets things out of my head and onto (virtual) paper; it helps me to feel like I’m doing something.

If people read it – that’s nice. If people think about what they’ve read – that’s great. If people act on something they’ve read – well that’s amazing! And that’s all.

In recent weeks there has been some, to say the least, acrimonious debate among certain parts of the blogging community. If you want to go back over that debate just search #crippingthemighty (no, I don’t know what “cripping” is either). To oversimplify, perhaps, people with disabilities who blog have been set against the (usually able*) parents of children with disabilities who also blog. As I understand, it is claimed that the latter (including me) are violating our children’s privacy, humiliating them, and pretending to speak for the disabled community of which we can, in fact, know nothing. We have been advised/requested/instructed to abide by a set of rules, including “thou shalt not blog about thy child without his/her explicit permission” (I paraphrase, but not much. See, for example http://ollibean.com/2016/01/06/six-questions-before-publishing-about-children/). Of course I cannot do that … realistically I am unlikely ever to be able to do that. So should I stop blogging?

[stunned silence; theme music plays; continuity announcer says, “Tune in next time to find out whether Alex will stop blogging or not.”]

Well, no. Sorry, #crippingthemighty. And here are four reasons why:

  1. What I write is my personal view as a mother and parent-carer. I do not pretend to represent the views of anyone else, disabled or otherwise.
  1. Most bloggers are avid readers of other blogs. I like to read blogs by people with disabilities, because it helps me to understand things I might otherwise not have understood; it makes me think about things I might not otherwise have thought about; and because many of them are just damn good writers. I also like to read blogs by people without disabilities (but see previous footnote*). And I like to read blogs by the parents of children with disabilities, particularly children with profound and complex needs. I value the experience and insight of people who have been there before. I can learn from them. And, to be honest, they are the only people I can learn from, because I have yet to read a personal blog (or anything else) written by someone as profoundly disabled as my son. I figure, just occasionally, people might like to read my blog for similar reasons.
  1. I believe that being a parent is the most important thing I will ever do. I consider my role as a parent to include loving, caring, protecting and advocating for my children and – yes – being their voice until they are able to speak for themselves, however long that takes. And this applies in blogging just as it does in everyday life. I have a responsibility in my blog, just as I do in the real world, to care for my children, to protect them, not to humiliate them or shame them. I take that seriously and I do not need someone else’s rules to make me do that.
  1. Fundamentally my blog is about me and my life. It is thus about parenting and about parenting a disabled child. But it is more than just somewhere I need to be careful what I say. Used responsibly, it is also a tool. I can use it to advocate for Benjamin and others like him. I’m not going to stop using that tool, because it is helping me to do my job as a parent. And, frankly, I need all the help I can get.

*I should like to point out here that there is of course a continuum between ‘able’ and ‘disabled.’ We are all able in some ways and disabled in others. I, for instance, am able to walk, talk and write; I am also asthmatic, myopic and a recovered anorexic. Polarising the community in such a way is not, I think, particularly helpful.

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6 thoughts on “What is this blog for anyway?

  1. Re: your #1, as the child of a mother who had schizophrenia, I love reading people who can illuminate things my mom could not. They help me understand questions that I could never find words for only looking in without a guide. I’m grateful for them.

    I get really frustrated anytime anyone tries telling someone what they can’t write (or are terrible people for writing). We now live in a world where people don’t have to suffer in silence. Blogs help people not suffer in silence. The fact that someone suffers some kind of trying experience related to another person and talks/writes about that does not mean there’s neither love nor respect for the other person. It means they need to find others who understand.

    Telling them to just shut up and be respectful is tantamount to saying, “Suck it up and carry the load by yourself, because I told you to.” Because that’s always worked really well for those who need a hand: being told to just suck it up in silence. By strangers with zero understanding of their total life circumstances, everyone’s very favorite authority.

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  2. I find your critique of the #crippingthemighty hashtag to be a bit dismissive and oversimplified. No one is saying that you can’t blog about your experiences as a parent. What people are objecting to is parents who claim to speak for their disabled children, or parents who share embarrassing, overly personal, or identifying details about a child without his or her consent.

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    • A couple of points here. Firstly, I’m sure my response (I would not call it a critique) is oversimplified. It is my personal take and it is aimed at my readers who are mostly my friends and family and may not be aware of any of this controversy previously. Secondly, many parent bloggers (I have spoken to several) do feel that we are being told precisely that, that we cannot blog about our children without their explicit permission, and of course blogging about parenting incorporates blogging about one’s children! I fully admit to posting identifying details about my children as I do not blog anonymously. I feel that the debate has become unnecessarily polarised and vitriolic when it could have been quite constructive, which is a shame. I merely intended to say that, despite that, I shall not be changing my blogging habits. If you don’t like that, don’t read my blog.

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      • There’s a difference between blogging about YOUR experience as a parent of a kid with a disability and blogging as though you completely and utterly understand the perspective of your disabled child. Some parents have been forgetting their voice is theirs and their child has their own voice, views, opinions, and thoughts. Even if they cannot vocalize them, unless we live inside their head we cannot know what these thoughts are, or even how much cognition they have. We’ve learned how wrong doctors can be in diagnosing how aware profoundly disabled people are, thanks to advances in communication methods and tech.

        Speaking as a profoundly disabled person myself, I have seen nothing but criticism for parents who attempt to speak as their child or forget their child may be fully cognizant of everything they say about them and speak intimately personal details that would be embarrassing if discussed about anyone else. Remember, the people you are criticizing here are the peers of your own child, once he becomes an adult. Let’s say technology advances to where he can also communicate by the time he’s an adult. How would you feel if another parent of a disabled kid dismissed his feelings about how people with disabilities were treated? Would you listen to what he had to say or line up behind the parents and dismiss him, too?

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      • I do feel like we are going over the same old ground a bit here, but nonetheless I will take your points one by one:
        “There’s a difference between blogging about YOUR experience as a parent of a kid with a disability and blogging as though you completely and utterly understand the perspective of your disabled child.” Agree. What I have a problem with is that that two are being tarred with an identical brush.
        “Some parents have been forgetting their voice is theirs…” I think these parents are very much in the minority. Most of the parent-bloggers I follow blog carefully and responsibly as parents.
        “… and their child has their own voice, views, opinions, and thoughts. Even if they cannot vocalize them, unless we live inside their head we cannot know what these thoughts are, or even how much cognition they have. We’ve learned how wrong doctors can be in diagnosing how aware profoundly disabled people are, thanks to advances in communication methods and tech.” Children like my son may have awareness, opinions and thoughts, but they do not have a voice unless we give them one. Are you saying they should forego such a voice until they are able to communicate for themselves, if and when that may happen (my son’s condition is considered life-limiting as well as severe)? Trying to imagine what I would feel if I were in his position, I suspect I would rather be spoken for by my mother, who spends every minute of the day with me and with whom I do communicate in my own way, than by another person who may class themselves as disabled but, by definition of their ability to communicate in a mainstream way, is poles apart from myself in experience. Having said that, I do not consider myself to be his definitive voice, but only his advocate.
        “Speaking as a profoundly disabled person myself, I have seen nothing but criticism for parents who attempt to speak as their child or forget their child may be fully cognizant of everything they say about them and speak intimately personal details that would be embarrassing if discussed about anyone else.” Me too. The whole debate has been intensely critical rather than constructive. But, as I said above, these parents are very much in the minority. What also surprises me is that there is no such criticism of the many parents who blog equally personal details about their neurotypical children.
        “Remember, the people you are criticizing here are the peers of your own child, once he becomes an adult.” As I said in my blog, there is a continuum here. No one is identical in ability or disability. Either we are all peers or none of us are. By the very nature of your writing and understanding I would guess you are no closer a peer to my son than I am.
        “Let’s say technology advances to where he can also communicate by the time he’s an adult. How would you feel if another parent of a disabled kid dismissed his feelings about how people with disabilities were treated? Would you listen to what he had to say or line up behind the parents and dismiss him, too?” I must say I don’t really understand this point. I am not suggesting anyone dismisses anyone else’s feelings. I am suggesting I continue to write about my experiences and to parent my son in the best way I possibly can, which may include writing about him in order to make his life easier. You are welcome to do the same.

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