Power of the bald – Power of me.

This is a struggle for power around accepting this path we are on, and indeed it is a path, not a curse, not a karmic debt or victimization that separates us from others. I see it all as an untying of the knots, a blessing and a valuable lesson on this journey.

We are all born and move through life tying ourselves in knots. Knots are formed through expectations; conditionings, beliefs and they form knots of fear, insecurity, difference and anxiety. We succumb to false identities and ways of being that leave us measuring ourselves against false images of what we should and shouldn’t be.

The moment we leave our mothers womb, we are seeking as human beings a need to belong in the world around us.

We seek acceptance from our mother and fathers.
We seek acceptance from teachers and work colleagues.
We seek acceptance from friends and community groups.
We seek confirmation from anywhere and everywhere outside of ourselves to prove we are enough.

But often we fail to look within, to resonate with ourselves as to who we are. The power that comes from acceptance is the hand that unties these knots that bind us to this fear and self-doubt.

Cutting these ties and existing just as we are and only as we are in each and every moment is where we find power to exist just as we are.Not measuring up or comparing, but being damn well enough, to ourselves most of all!

We find power in who we are by showing up vulnerable and not attached to societies normality. We find power in not following a belief in how we should look through social media and visual representations of the perfect woman or man.

We change our feeds, we look beyond the superficial and we stand proud for the difference we bring to the world. We reach a point of acceptance for that person we see in the mirror when all we have known has been stripped away? We choose, and we choose powerfully, to be all we are in this moment and this day and we keep choosing! For in choice and the choosing we create what is acceptable, what is beauty, what is feminine or masculine and what is enough.

You look beyond the pain; you look beyond the discomfort of what you see. You sit in a place of complete vulnerability and you find comfort in the discomfort.

You slowly untie the knots that have bound you to how you should look and who you should be and you keep unraveling those restrictive knots that limit you in accepting yourself just as you are. You remember with hair or without hair you will find faults or ways you aren’t acceptable because that’s what humans do!

It may be weight, it may be hair, and it may be the size of your thighs or the sound of your voice or the shape of your eyes or the colour of your skin or the choices in lifestyle or the preference of your sexuality. At any given time you have choice to choose who you are for all you are, and all you aren’t, just as you are! No excuses, no exceptions, it’s a damn choice we all have the power of making. It’s a human ability we all possess in any moment – To choose to love ourselves for all we are and all we aren’t.

So to all of my fellow Alopecian beauties, I choose being bald, I choose being different. I like walking into a room full of people and feeling like I am not like everyone else, it means I have a story unlike everyone else’s. It means I am unique and vulnerable and I am okay in the uncomfortable of that and sometimes I’m not and that’s okay too.

It means for the most part I accept who I am in each and every moment and sometimes I’m just faking it till I make it, but I am choosing all of this, every moment and it is there I find the power. It is there I gain strength every time I choose to love me, bald and beautiful and uniquely different.

It is there in that moment that I stand proud for all I am and all I am not, striving and growing and loving me. It is in this power I find strength to become a better human being on this journey to be open and compassionate for every other human being struggling with who they are in this world.

So power to the bald, power to the unique, we all shape the beautiful world that our differences exist within.

-Bianca

 

 

 

“Alopecian” – A Language Guide

ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]

Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.

Plural: Alopecians

Examples:

  • Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
  • Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
  • As an alopecian, I loathe being called an alopecia sufferer.

 

I’ve been using the term alopecian for a while now, although I’m certain I’m not the first to do so. I’m also often questioned, almost always from non-alopecians, about why I use this term.

My primary reason for using the term alopecian is simply that I don’t like the alternatives.

“Alopecia sufferer” is probably the worst, for reasons which I imagine are obvious. I don’t think of myself as suffering, a victim of some tragic affliction. The term “alopecia sufferer” implies that the condition is something that is wrong with people like me, which I fundamentally disagree with. It’s demining and implies that I should want myself to be ‘fixed’.

The most accepted alternate terminology is “people with alopecia” or sometimes “people living with alopecia”. These are fine for formal discussion and professional language, and are certainly preferable to the “sufferer” idiom, but still I find them lacking. For one thing, the length and formal address of the phrase feels to me out of place in casual conversation – “Why is that kid staring at you?” “Oh, because I’m a person living with alopecia.” It’s a clunky sentence.

My primary objection to ‘person with alopecia’ however comes from the philosophy behind person-first language.

If you’ve read any disability related literature or been involved in disability advocacy, you’ll know that person-first language is a hot button topic. The theory is that when discussing someone with a condition you should name the person first and the condition second. This is a reversal of the usual English syntax, where the adjective usually comes before the noun (eg. the brown fox, the lazy dog). So instead of saying Deaf person, or autistic woman, you would instead say person who is Deaf, and woman who has autism. The use of person first language was adopted by many advocacy groups in the late 1980’s, based on the hypothesis that how we speak about a subject influences feelings and behaviour toward said subject. Person first language is therefore supposed to the place the inherent humanity of people with disabilities in the forefront and prevent dehumanization and disrespect.

That’s the theory anyway.

Unfortunately, language is incredibly complicated.

While there are a great many people and many organisations who believe that person first language is the way to go, a growing number of people working in disability activism find the terminology and the rationale behind it to be inaccurate, or even kind of insulting. I’m in the latter camp.

There are three potential problems with person first language.

The first is the implication that non-disabled people apparently need to be reminded that disabled folk are still human. I can’t even think of a way to describe that other than ‘highly problematic’. If you need to invent a language paradigm to remind yourself that other people aren’t less than you, I would suggest you have some deeper problems which need examining.

The second problem is that the phrasing of “person with X condition” or “person living with X condition” implies that there is something wrong with X condition. It boils down to the same ‘person with a problem’ descriptor that ‘sufferer’ has. The implication is that the condition is bad, and inherently devalues anyone who has it.

The final issue is that for many people living with these conditions, the idea that they can separate their experience as a person from their experience with their condition is not accurate. For people whose condition/s effect the way they think, feel, interact with people or have access to the world, it’s impossible to separate daily life as a general human from daily life with their specific set of circumstances. Their condition is a fundamental part of their identity and the way that they experience the world.

So what’s the alternative?

Identity first language.

Identity first language uses (you guess it) the identity or condition before the subject, as in Deaf people or autistic woman. Many people find self-identifying in this way to be quite affirming – having a terminology that feels like an ‘us’ rather than a ‘them’.

In the case of certain identities or conditions, this can be difficult when there is no grammatically correct way to use this phrasing. Alopecia is one such identity where there is no correct or formal way to use identity first language. “Alopecia person” doesn’t really fit. Hence the use of the informal or colloquial term alopecian.

I know it’s not a term for everyone, and most definitely not a term for every occasion. You won’t be finding it academic journals any time soon. It’s also not something you should be calling someone else, especially if you aren’t an alopecian. The key is in self-determining, in defining for yourself and as a community how you want to talk about your lives.

The counter example I’ve seen tossed about a few times is that we don’t call people with cancer ‘cancerians’. Absolutely right, because that would be rude. It would be rude because the term that the community has chosen for themselves is Survivors. The point is they’ve chosen the terms they want to define themselves with, and that’s a pretty amazing thing.

Ultimately, there is never going to be one word to accurately describe so varied and diverse a group of people as those thrown together by this random quirk of genetics. In the meanwhile, I hope you all feel welcome to join and enjoy being a part of this alopecian family. Maybe it’s not what you had thought to expect, but it can be pretty darn outstanding.

Love, Alopecia.

 

“Courage was not the absence of fear, but the triumph over it.”

Hauling a tripod only marginally smaller than she was, my 5 foot nothing best friend struggled down the school corridor. A camera strap was clamped under one arm and a school bag over the other. She had two jobs for today: keeping me calm and filming my talk. Judging by her load, she intended to take her jobs very, very seriously. I stifled a grin.

We all waited in the bathrooms of the gym, four of my best friends and I.
The shuffle of unbuckled t-bars and the muted voices of my passing peers sounded more ominous than they normally did – like a brewing storm preparing to swallow me whole. They were probably filing into the year level meeting talking about the latest cat fights and boy drama or the stack of unfinished assignments piling up on our desks. Not for long though.

Apart from my friends, nobody knew I had Alopecia. Since getting my suction-based wig almost 5 years ago, I had hidden my condition from almost everyone. It was an exhausting way to live. So today, in front of all my peers and teachers, I was giving a 15-minute presentation about my hair loss journey.

The bathroom was too small to get any real pacing done, so I fidgeted in one corner, trying to shake the dread oozing through my body.

There were many things I was afraid of: people finding out I didn’t have hair, what they would say about me behind my back and once again being given the ‘bald girl’ label, like I had in primary school. What if my difference robbed me of a real place to belong? Worse still, what if people didn’t understand why my condition had been such a traumatic experience? After all, there are many illnesses which are worse than mine.

But I wasn’t the person I was pretending to be and that needed to change. There was a whole new Stef banging on the inside of my ribcage, desperate to get out and show the world who my condition had made me.

‘Okay Stef, it’s time for us to go up and join the others,’ my friend smiled. ‘Don’t worry, you’ll be great. We believe in you.’

‘Can you sit in the front row?’ I pleaded. They nodded and took turns hugging me.

As they filed out of the bathroom, fear went back to slobbering in my ear and putting its tongue in my thoughts.

I’d imagined this moment many times over the years- not me staring at grout in the bathrooms (that’s not exactly the stuff of fantasies), but using my experiences with Alopecia to help others.

For many years I had wished for my hair to grow back with every superstition I knew of, for the world to take away my difference. But 5 years on and I didn’t want this chapter of my life to end without it being published.

The funny thing was that I was in that bathroom with two opposing of fears. I was afraid that I wouldn’t be accepted as I was and I was afraid that I would spend my life pretending to be someone I wasn’t.

When it was time for me to enter that hall in my rainbow headscarf and ostentatious outfit, I threw open the double doors and smiled. Never before had I seen that many mouths pop open in surprise. It was like imagining the audience in their underwear, without having to suffer the indecency of doing so.

I told them how you’re never truly helpless because the one thing you can control is your perspective. I told them that normality is the biggest hoax in the history of the world and to embrace what made them a unique. Most of all I told them about a Stef that they had never been introduced to.

My friends sat in the front row, some with tears streaming down their faces.

When it was done, the whole room erupted in cheers, whistles and applause. Friend upon friend piled onto me in the biggest group hug I’d ever been a part of. They were crying. I was laughing. It is without a doubt, one of my most treasured memories.

Over the next week people stopped me in the corridor. Sometimes it was just to hug and thank me for sharing my story, sometimes they’d cry and sometimes I’d get to hear a small part of their journey. I needed to take a leap of faith to realise what an amazing group of people I was surrounded by. Fear has this way of filtering out the positives, until all that’s left are the ghastly ‘what ifs’.

courage-was-not-the-absense-of-fear-image-one
But the thing is, in order to turn a dream into a reality, we need a small amount of fear to motivate us. We need to be afraid of not getting the life we truly desire.
So what matters is not that we feel fear, but how we respond to it. Do we run and hide? Do we avoid everything that could cause us pain? Fear is a brick wall and once you break through it, you might find that what’s on the other side is so much better than you imagined it could be.

@stefhodgson
stef@aaaf.org.au

Welcome!

Welcome to Love, Alopecia!

If you’re here, you’re most likely one of the millions of people in the world who make up our alopecian community.

Perhaps someone in your family, maybe your child or partner or sibling, has joined the alopecian tribe.

Maybe you work with someone with alopecia, perhaps as a hairdresser or wigmaker or doctor or psychologist or teacher, and you want to know more about alopecia in order to help them the best you can.

Welcome.

Love, Alopecia is a place for all people who make up the alopecia community. If that sounds like you, you can keep up to date by following us for email updates, or by following AAAF on Facebook.

This is a place for the sharing of stories, information, advice and support. Our writers are all experts on alopecia – we’ve been living with it for years.

Stef has been a Support Ambassador with AAAF for several years. Stef has hosted numerous awareness talks at schools, conferences, and business events and has featured on TV and radio, all aimed at improving awareness of alopecia through education. She has had alopecia since she was six  years old.

Georgia (AKA George) is also Support Ambassador, in addition to her main role as the AAAF Secretary. Her background is in media and business, and has had alopecia for as long as she can remember.

Our other writers are, well, you. We have Guest Writers from within all different areas of the alopecia community. They may be blog writers already or may just have a single story to tell, but all are a vital part of what we do here.

Our philosophy is about approaching alopecia as an experience and as an identity, not as a disorder to be overcome. As well as discussing alopecia-specific experiences and advice, we focus on wider issues of image, identity and lifestyle. We’ll be posting articles, opinions and stories centred around the many ways AA affects our lives and impacts who we are.
This project has been proudly developed and supported by the Australia Alopecia Areata Foundation Inc.

If you’re looking for information about Alopecia Areata, how and why it occurs and how to manage the condition, click here to access the AAAF site. If you’re looking for support for people with Alopecia Areata within Australia, AAAF has state based support groups, Support Ambassadors and a variety of tools and resources you can access from here. For parents seeking resources for a child with alopecia, click here to access the AAAF Parents Support Page, which include links to our School Pack and Parents Brochure.

Please feel welcome to browse the site, chat with us in the comments and follow us to stay up to date. If you’re interest in writing for us, we’d love to hear from you! Please drop us a line at lovealopecia@gmail.com