Advocacy vs. Acceptance: Why the Two ARE NOT Mutually Exclusive

If you know me, then you knew it was just a matter of time before I put my $0.02 cents in on this subject.

I have been on various alopecia support websites and communities from the beginning. I have blogged, discussed, emailed, phoned, written about, given speeches to, and chatted with thousands of people over the 29 years that alopecia has been in my life. Not once during that time have I sugar-coated what I thought of alopecia, how I felt about my looks, or my level of acceptance when it comes to alopecia. I am a human. I adapted to the changes that alopecia brought into my life and the lives of my family and friends. I have undergone treatments of all kinds, and I have been blessed enough to have periods of regrowth. The truth of the matter is I have lived with alopecia for far longer than I have lived without it, and guess what? Life went on anyway, and so did I.

Now, I have blogged before about how the current model of education, awareness, acceptance, and research is missing the advocacy link that so many other support models have, which is the fuel that progress needs in order to find that cure that, quite frankly, alopecia needs. Having your immune system turn on itself and attack an organ in your body (for everyone who forgot their biology and anatomy lessons from school, skin and hair ARE organs), no matter how you spin it, is NOT normal. Alopecia affects more people than lupus, MS, Type 1 Diabetes, Rheumatoid Arthritis, and Celiac disease COMBINED - yet for every 5 studies being conducted for lupus research or diabetes research, there is only 1 for alopecia. Something is wrong with the math there people. If anything, it sounds like the fuzzy math the government uses to run itself and the economy into the ground. It's not fair, it's not right, and it doesn't take a rocket scientist to figure that out.

I've lived with alopecia for 10,621 days - and even if a cure were to be found tomorrow, more than likely I would either continue to shave my head or keep it very, very short - simply because I live a very hectic lifestyle and I don't have time to worry about styling my hair or even combing it. However, that does not mean that I don't want a cure, not by a long shot. The debate over acceptance and advocacy is actually quite similar to the fights that the Catholic Church led for most of its existence between faith and reason. It is only within the last 100 years, as a matter of fact, that the Church has acknowledged that faith and reason are not mutually exclusive. And just as faith and reason are not mutually exclusive, neither is advocacy and acceptance when it comes to alopecia. You have to accept that it happened and love yourself unconditionally before you can even begin to advocate for an effective treatment, let alone a cure. THAT is the position that Robert is coming from, and it's one that I wholeheartedly agree with. It's a shame that now he has been suspended from Alopecia World, a truly remarkable online community, because of that opinion. I too have noticed how those of us with the strongest voices with similar beliefs are gradually being driven away as well; and that is a shame, because having all sides of an argument, rather than an accepted "party" line, so to speak, makes you an informed, educated patient, and an informed, educated patient is an empowered patient. And an empowered patient, when there are enough of them, can change the world.

I also think that there is a difference between coping and accepting. Coping is something you do short-term, in the here and now, to get through an immediate situation. Accepting is coping taken to the next level; something that comes with time and something that unfortunately, in 29 years of living with AA, I have seen VERY FEW people do. There are more people hiding and ashamed of themselves and living in a self-imposed exile because of alopecia than there are living, thriving, and prospering in spite of it. I'm sorry if you get offended, but that is the truth of the matter. It's still the white elephant in the room that EVERYONE is still dancing around. And chances are, if you ARE offended by that last statement, then very likely you fall into the former category rather than the latter. The bottom line is this: I'm a fervent, passionate supporter of the alopecian community at large, regardless of where your stand is. Nobody is demanding that you "cope" with alopecia overnight. Nobody is asking for you to even come to any level of acceptance overnight either. However, I am sick and tired of seeing any discussion about why we should be stronger and more united in our quest for a cure disintegrate into "I'm quite happy and don't WANT a cure", and then in the next breath hear a million arguments more about why your life went to hell and fell to pieces when you got an alopecia diagnosis. That kind of attitude doesn't do ANYBODY any good. I'm also sick and tired of seeing so many people who have more strength than they give themselves credit for play the victim and demand to be treated with kid gloves over something that is EXTERNAL. When it comes to any condition that is life-changing, diplomacy, tact, and looking at alopecia with rose-colored glasses can only get you so far. There comes a time when you have to stop looking at alopecia like it's covered in rainbows and glitter and see it for the ugly monster that it is. Self worth, and self-esteem, are INTERNALLY derived. That means that it comes from inside, not out. It really is a poor reflection on our society and how superficial we really are to let something so temporary permanently determine who we are and how we should be perceived.

I am PROUD to say that when people hear my name, the first thing they think of is my intelligence and my academic and professional achievements. Hair is NEVER the first thing that they think of when they think of me, and I spent years molding myself and preparing myself for just that. That was probably the most important lesson I learned as a child growing up with alopecia - play to your strengths, not your weaknesses. If you play to your strengths, then THAT is what people will remember you for. I believe, and have ALWAYS believed, from Day One, that if your only valuation of yourself is based upon what's on top of your head, you have far deeper issues than anyone on this site, or anyone without an MD or Ph.D can help you with, and perhaps those issues need to be addressed first BEFORE even tackling the alopecia issue.

Some people will get inspired by my response, most will see the logic in the response, and then there are the usual suspects that will criticize it, very harshly criticize me, and then explain why I shouldn't see things as realistically as I do and then mix no words about the way things are. That's fine. Everyone is entitled to their opinion. But I think it's a damn shame when the ones who fight the hardest for everyone are the ones who are accepted the least. But regardless of what you think, know this: it's past time we declared war on alopecia. And in this war, there is NO Geneva Convention to abide by, nor should there be. In this war, the alopecian community should be strong, it should be united, and our battle cry should be, "Take NO prisoners!!"

Who's got a response to that?

Views: 40

Comment by Bald and Fabulous AKA Terri on July 24, 2011 at 2:40pm
I agree whole heartedly with you. It's taken me along time to "accept" my alopecia and do mean accept. I had to come to a point in my life where I was comfortable in the skin that I have and look inwards and shine. When a cure arrives, note I say when not if. When it arrives I will rejoice with others but if it don't I know inside of myself I will be fabulous. The only issues I had with Robert was his personal attacks unto me. His delivery style lacks a great deal. I'm for all opinions but if you attack me on a personal level....that's where I draw the line. Having such toxicity is not part of my life anymore. And I will dissociate myself from it.
Comment by rj, Co-founder on July 24, 2011 at 4:24pm
*** This is a repost. ***

YoKasta wrote,

> THAT is the position that AU-NO-MORE is coming from, and it's one that I wholeheartedly agree with. It's a shame that now he has been suspended from AW because of that opinion...

YoKasta, as much as I respect and value your opinion and contributions to Alopecia World, I'm compelled to point out that this is not why AU-NO-MORE was suspended. Rather, in direct violation of the warning that was sent to all members of Alopecia World just the a few days ago, he had the audacity to come on here and call members of this community Nazis ("alo-nazis" to be exact). Regardless of what may be a person's opinion of alopecia-related matters, this kind of brazen ad hominem simply will not be tolerated in Alopecia World. As perhaps you know -- many other members certainly do -- we sent the aforementioned warning because personal attacks, which have become more frequent than ever, do not enhance anyone's experience in and of this community. Anyone who believes for one moment that this is appropriate behavior as well as that members of this community are not worth their time should certainly find another venue in which to express him/herself. It really is that simple.

YoKasta also wrote,

> ...and I too have noticed how those of us with the strongest voices are gradually being driven away, and that is a shame, because having all sides of an argument, rather than an accepted "party" line, so to speak, makes you an informed, educated patient, and an informed, educated patient is an empowered patient.

If someone feels that they were "driven away" or that there's some "party line" which Alopecia World officially or unofficially endorses, then this is as unfortunate as it is inaccurate. The position that both Cheryl and I, and therefore Alopecia World, have always taken -- going back even to our old AlopeciaAndLove blog, which predated Alopecia World -- is that each alopecian should pursue coping strategies and treatment options that make that person feel comfortable in their own skin. Cheryl in particular has been very active and visible in alopecia community for over 20 years and has never once proferred the false dichotomy between looking for a cure and coming to some level of acceptance. So the idea that anyone officially associated with Alopecia World has somehow taken one side or the other on these issues is patently false and misleading.

The bottom line is that what's true today has always beeen true in Alopecia World. You and every other member of this site are free to have whatever opinion you desire, but every member of this site must also be respectful at all times and adhere to Alopecia World's advertising policy and terms of service. In other words, all opinions are welcome but offensive behavior is not.

With all due respect,

rj, Co-founder
Alopecia World
Comment by BTB (John) on July 25, 2011 at 7:53am
I agree Tan have bumped heads with the same individual!!!!
Comment by youarebeautiful on January 2, 2014 at 6:57pm

I love your style, Kastababy!  

Have you seen the movie Loud, incredibly close (?) with Tom Hanks.

You are a pleasant contradiction.  You should be a writer if you are not already.

I love people (myself included) who don't fit into neat "little boxes."

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