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:
- 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.
- 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.
- 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.
- 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.