Blog > Thoughts > Sean's Thoughts > Leadership?
Leadership?
Written by Sean on Tuesday, February 19, 2008
It seems some people see me as a community leader for our wee community. It also seems some people resent or envy this position of leadership I have been given by others. I never asked for a position of leadership. I’m just a regular guy who’s dealing with his Body Integrity Identity Disorder as best he can.
Of course, I’m not sure there *is* such a thing as a transabled or BIID community. And if there isn’t a community to be a leader of, perhaps there can’t be leaders… Perhaps it’s just that I’m active, and have been for a long time. But let’s assume that I am indeed perceived as a leader. How did I get here? Why are people seeing me that way? And is it important? And if so, important to whom?
As I said, I’m just a regular guy, dealing with my own problems in the best way I can.
It so happens that for me, part of dealing with the BIID issues involves talking about it, a lot. Sharing my thoughts through this blog. And I’ve been doing it for a long time – nearly 14 years now. Some of the people who appear to resent me were not even 10 years old when I started blogging about BIID. So, if there is envy, they should consider that it takes time to get known. Time and hard work. Someone called me "philosopher king of the transabled". I don’t know that I ever set myself up for that, but perhaps it’s what I reap after years of verbal diarhea ;)
I also am genuine in my dealing with people. I am honest about who and what I am. You know where you stand when you talk with me. I am opinionated, but I am also willing to listen to your argument. If you make sense and present me with an aspect of something I hadn’t considered before, I’ll be swayed. My opinions are not just out of the blue, they developped over the years, partly as a result of doing so much thinking. I’ve recently been called "intolerably arrogant" and accused of thinking that my " way of pretending and [my] experiences are the only way that pretending should be done". Perhaps I come across as arrogant. That is not the intent. I am not better, nor worse, than any of you lot. I also don’t believe my way of "pretending" is better than yours, or is the only way to go. I further don’t believe that the level of introspection I conduct is required by everyone else, or even anyone. Diversity is good. But if I encounter something that I think is wrong, I’ll point it out. If that makes you uncomfortable, consider why! If you can’t give a fig, that’s your problem, not mine. But back to leadership… Being genuine and consistant probably helps building a good reputation.
Another part of what I do, who I am, is that I advocate for what I believe in. I try and work with the medical professionals and the academics interested in the issue of BIID. I read what is written about it and I analyse it and think about it. I use this for advocacy. I believe that surgery is the optimal solution for many transabled people. Not for everyone, we’re all on a continuum. So I advocate for surgery. I believe that greater societal awareness will lead us to better acceptance and will more likely result in surgery for those who need it. So I do what I reasonably can to increase awareness, even though it results in really unpleasant exchanges sometimes.
And yet another fact that may give me prominence is that I have been using a wheelchair, 100% of my public life, for a long, long time. "The voice of experience", I guess. I know what I’m talking about. There are not many things pretenders usualy talk about trying as a wheelchair user that I haven’t done.
So, if you have an issue with me and perceived leadership, don’t complain about it, contact me and talk to me. Maybe we can get to some understanding. And if not, at least, we’ve tried! Just don’t blame me for being in a perceived position that I didn’t ask for.
Tags: Advocacy, BIID, Body Integrity Identity Disorder, Experience, Leader, Transabled, Wheelchair
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14 Comments
2 On 19 February, 2008, Sean said:
Well, one might have to point the finger at Claire, who is pretty active herself, even though she hasn’t posted here for a while
3 On 19 February, 2008, Claire said:
Ha. You missed the part where I said “regularly”.
4 On 19 February, 2008, Sean said:
Big fish in a small pond indeed. I don’t care about the size of the pond, and I don’t care about my size as a fish. I’m not in it for leadership. I just want to see appropriate treatment options for transabled people.
5 On 20 February, 2008, art5080 said:
This is NOT to understate your role, nor meant
in any critical way, but…
It brings to mind a saying I heard long ago
which simply states:
“The man with one eye is king in the valley
of the blind.”
/Art
Well I am quite flattered to know that the “philosopher king” title I tagged you with has stuck in your mind. I stand by it still. You’ve earned it in spades.
Leadership or not, it doesn’t matter too much. Many people see you as a person who knows it very well, as a person who is a step forward.
May be as a art said but with a littles changes:
“The man who lives 100% of his public life from a wheelchair by his own choice is king in the valley of those who wanna do that but: “Not now”, “If I moved”, “When my life becomes stabilized”, “Fist of all I should live on my own” …
I’ve been reading this blog and sometimes I feel like a stranger reading other’s life, but sometimes I feel like I’m reading my dreams
Sean,
All I can say is that for a very long time, you have spoken out about BIID. Furthermore, you continue to encourage real discussion about this subject. Unfortunately, there are some out there who haven’t learned to deal with real life let alone what they might actually have to face if they could actually receive surgical treatment for BIID.
At any rate, thanks for doing what many of us (like me) have been reluctant to do: actually take a huge risk and advocate the one treatment that we know would help.
Sean,
Personally I have never spoke to you but I have read some of your blogs in the past. I must first say I have not fully agreed with you on everything in the past, but I hold nothing against you for what you have said, however, recently I did mention you in a blog I wrote on my site in which I mentioned that you were a very larger reader and how I felt that everyone else who was trying to come into our community and take part was looked down upon by a lot of members, not you but others who somewhat seam to worship you and a very other leaders in our community.
I myself have been highly happy and pleased with my life and have done my best to live as much of my life in my braces and wheelchair as I can. I have been active in our community now for around 5 years, however in all that time I have pritty much always seamed to be somewhat of scum and someone that everyone looks down upon…and I believe that is because everyone only wants to listen to the elite of our comminuty and not give anyone else a chance.
Like you I have been threw many trials and tribulations and even went threw some very hard times for who I am as a person. Threw it all though I have only become stronger and more proud of who I am. However, at the same time these hard times also forced me to challenge my feelings and to refect upon them and try my best to find answers to the early questions of why and the struggles of self acceptance.
Claire,
As for people who have blogs that only people on their friend’s list are allowed to see…my blogs are like that, only people who are friends on my 360 can see it…why do I have it like that? Not so that only certain people can see it or so that I can protect myself from people who don’t agree with me and want to jump down my throat because I am a pretender…The reason is simply because I want to see who is reading my stuff so I can try to become friends with them and IM back and forth and just simply be friends. Anyone can see my profile and then add me…when they do I IM them and talk to them for a few getting to know them while I add them as a friend so they can read my blog. My whole 360 is nothing but about me being a pretender and how proud I am of who I am…
I am sure there are other people out there who have blogs just like I do but have them so only their friends can see them but mean while their front page tells every thing about them and their feelings openly… Don’t be so quick to judge just because someone doesn’t have their blog out there in the open.
11 On 22 February, 2008, Claire said:
Wheelman, some clarification is needed. I have no problem with people having private blogs; I understand that and I think in many cases it’s wise.
However, what I do have a problem with is people who resent Sean or speak out against him for having a leadership position, and yet do nothing publicly to deserve a leadership position of their own. That’s all.
12 On 22 February, 2008, Sean said:
Wheelman, I’m glad you have nothing against me. But if you were, you wouldn’t be the first one ;)
I too want to make contact and develop relationships with people. And I do, I have made some very close and dear friends through interacting on this site. But considering that I routinely have up to 1,500 people read the site EVERY DAY, there’s just no way I can make friends with everyone. Also consider that you say “everyone can add me as a friend”, it means that anyone who has a 360 profile/blog can. Not everyone wishes to open yet another account on yet another service just to be able to see your blog.
As for people looking down on you… Perhaps they are, or maybe they aren’t. Maybe it’s just a miscommunication, a misperception on your part? I don’t know. Just food for thoughts
Leadership, teamwork, group efforts, all familiar buzzwords of the ’80′s.
People are very often looked upon as “leaders” by virtue of the fact that they simply are able to articulate a point of view and justify it to other people, or be willing to listen and understand another point of view and not critical of it.
My definition of leadership is being able to inspire an organization made up of differing individuals to achieve a common goal.
A leadership role was assumed by the persons who started this website, I take my hat off to them. They took initiative and have furthered our cause to some degree. Do not obligate them to lead us up the steps of Parliament or some professional association, nor fault them if they do not do so.
If somebody volunteers to lead in this manner, then great.
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1 On 19 February, 2008, Claire said:
I find it hilarious that anyone should take issue with you being a perceived leader. You’re the ONLY one regularly, publicly talking about it. All the others are on members-only boards where nobody ever says a word, or are on invite-only blogs that only their friends can read.
If anyone has a problem with who is a perceived leader in the community, then they can show us that they have something thoughtful and intelligent to say publicly to those interested in the topic. If there is any such a one out there, I would love to read what they had to say and would welcome them sharing it. The more of us, the better.