In my last post, I offered what I felt was constructive criticism to a wonderful event I had attended the previous week, Nethui. My thoughts generated some discussion, which was a good thing. I participated in the discussion on twitter during the day, and went out for a wonderful evening reliving the conference with colleagues in the library community.
That night I checked my email, twitter, facebook, the usual. My usual pattern is to be social for a bit, then play videogames as a way to wind down for sleep. In between those two acts, I decided to quickly check for comments. I don’t post often, so the thought there might be something to respond to was exciting.
Shortly thereafter I had to talk myself out of posting a somewhat scathing comment and found myself instead writing an email to the President of InternetNZ. The email itself was respectful, but I had also appended my comment to illustrate the impact the situation had had on me.
I was worried about the possible damage done to my reputation and possible employment consequences, given I was not attending the event to represent the mental health community.
Who’s to blame?
Not the commenter. I’m saying that right up front. I know we have a finger-pointing culture in New Zealand, but I’m not a part of it. The commenter made a well-considered response. They missed the point, sure, and I’ll describe how they did below, but it wasn’t because they intentionally disrespected me, or other people with my disability.
Not me, either. My initial reaction could have certainly been damaging to myself, and possibly to others. I didn’t have full control over myself, however I was able to address matters so my reactions didn’t harm others, and over the next 24 hours continued to manage the situation to a positive outcome for all parties. In the perspective of my life’s history, this is a positive result of a lot of work. While I don’t wish to have crises of any sort and they feature less and less frequently in my life, I’m glad to know how quickly my faculties return. I used to spend months out of step with reality after upsets. A couple of hours is frankly a wonderful sign.
What set me off?
Three things, really.
The first is personal to me. The commenter gave considered and kind advice as to how I can seek help and support in a conference setting. What they weren’t to know is that I have attended, presented workshops, delivered keynote addresses and all-round networked at a number of conferences over the course of my career, and that I had been negotiating my personal disability while doing so quite successfully. I have been exploring advocacy issues around disability and access for a number of years (starting perhaps with my contribution to this excellent book) and felt proud that I had given my own feedback in clear terms that were recognised as worthwhile by trusted others working in access. Realising that someone had seen my well-reasoned thoughts and interpreted them as a plea for help left me feeling humiliated.
The second was organisational. The commenter was Lance Wiggs. A little research let me know that he was one of the councillors of InternetNZ. As my post was commenting on an InternetNZ event, it needed to be clarified whether he was responding as some internet guy (in which case his error was a little upsetting but minor, understandable and forgivable) or on behalf of the organisation (in which case some research really should have been done first). Yes, I really do care about things like this. Good organisational practise is one strong plank on which progress can be built. I’d just joined the organisation and I was frustrated that I felt a duty to give feedback to the council over something that should have been standard operating procedure.
The third factor was the preconditions.
What were the preconditions?
Everything. My abuse history. Organisational change. Dealing that afternoon with a truck driver arriving with a 300kg piece of equipment and no means of getting it off his truck, let alone to its destination inside my workplace and one floor up. The fact that the post itself was based on a careful analysis of my upset over comments made at the conference. The fact that upset happened not because I mind every word people say, but because I find it harder to let go what is said when I am also dealing with the extreme stress of being in such a densely-packed, stimulating environment for three days on end. Having a life where the most clearly written roadmap says “take your pills and keep your head down”.
What could have done differently?
It would have been easiest for Lance not to have bothered. He didn’t create the preconditions. He didn’t need some guy going off at him. This is the sad thing about mental health. When things go wrong, trying to help can cause a seemingly inexplicable reaction.
I suspect Lance would bother anyway. We’ve had a bit of offline talk, and it’s clear to me he really wished to offer support, and took quality time to consider how.
There are no clear answers here, as I’m still exploring ways to think about it. I’m used to pretending I don’t have my disability (or rather that is somehow is present but simultaneously doesn’t affect me) because I get sick of finding out the people who stop talking to me, or start talking to me like I’m dangerous, a child, or an idiot as a result. I find Philip Patston‘s article provides some useful thoughts.
As with other disabilities, the help I require is different from the help required by another person, even one with the same label. There’s no universal design for sufferers of PTSD. There’s no act of inclusivity a person suffering from depression can’t find a way to isolate themselves from.
What do I want? I want my thoughts to be heard first and foremost, and for people to be blind to my illness in the same way as they wouldn’t stare at someone’s wheelchair. It doesn’t mean we can’t be honest about it, but it does mean if you wish to talk about it you should find out where I’m at first. Perhaps the best thing to do is listen if I feel like talking, and let me ask if I feel I need advice of any sort. If you think I have triggered and are concerned, wait for me to collect myself and ask me what happened. If I feel comfortable around you I’ll let you know it’s ok, or what went on. If I’m not, it’s most likely not about you unless you’re a particularly terrible person – some of my best friends are simply awful.
What about InternetNZ/Nethui?
I guess one thing I’d ask is to be a bit more active in shouldertapping relevant members of the mental health community. I’d particularly like to see patient advocates (who are often former patients themselves) involved – practitioners often take the lead in talking about the experience of mental health in this country, which is a little like battery farmers talking about the experiences of chickens.
Sympathetic and helpful battery farmers, of course.
