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Disabled Voices Online: Interview with Sylvia from Love Disfigure

Aidis Trust logo with the words "Disabled Voices Online" beneath it.

This week, we have an interview with Sylvia Mac, a lady who is actively trying to fight the stereotypes around beauty and physical disabilities, primarily through her site Love Disfigure.

Sylvia runs Love Disfigure, a site where she shares her own experiences of disfigurement and tries to empower others to believe that their scars do not make them ugly. You can find Sylvia Mac’s website at: www.lovedisfigure.com

Why did you decide to start Love Disfigure?

I decided to start Love Disfigure to help raise awareness for those living with a disfigurement as I felt there wasn’t enough help out there and wanted to support others in similar situations to myself.

You say on Love Disfigure that for much of your life you hid your disfigurement. What made you change  that? 

I got to the stage in my life where I spent most of my days crying and not knowing why. I looked at my children and realised that I could potentially be ruining their life as much as my own, so needed to do something about it.

Do you think sharing your disfigurement with the world has helped you to cope with your own situation and challenge your own perceptions of disfigurement?

Yes and no. I think I was already at a point in my life where I was able to change my mindset or way of thinking. It was either continue on a downward slope or turn my life around by thinking positively. I had nothing to lose and by accepting myself and allowing others to know me and my story certainly was a factor in my life that helped me. 

Why did you decide to call your website Love Disfigure?

I decided on the name Love Disfigure because I wanted to reach out to everyone who had a skin condition, health condition, burn, mark or scar and were affected by their appearance. The name seemed to fit in place perfectly by adding the word Love as we want people to accept us for the way we are.

Why do you think many people perceive disfigurement as a negative thing?

I feel that there’s not enough understanding around Disfigurement. Media often show facial Disfigurement on villains and magazines and dictionaries will use the words “horridly disfigured” which doesn’t help us in society in becoming accepted. 

A report published this year called “disfigurement in the UK” which was produced by Changing Faces Charity. They summarised the report as “it shows that people with a disfigurement have been left behind in Britain’s progress towards being a fair and equal society”.

Unfortunately this includes education, work and personal relationships which covers almost everything in our everyday lives.

What do you think needs to be done to challenge peoples’ perceptions of disfigurement? 

We need to educate young people in schools, colleges and universities. As a child who was unable to achieve to the best of my ability, it is important for tutors to also have some insight to Disfigurement to support young people when needed. If we can educate early on then there’s a good chance of changes for the future. There needs to be more support and people speaking about disfigurement regularly whether TV, radio or online. This is one of the reasons why I shared my story so I can not only raise awareness but help others.

What feedback have you had about Love Disfigure?

The feedback I received was all very positive. After releasing my story with the BBC, I was inundated with emails worldwide with messages of thanks. I received messages from burn survivors, people with skin and health conditions and families of those affected. I also had many emails from people who had never heard of disfigurement and were happy I drew attention to it. It makes my fight real and want to work harder in making change for those affected.

How do you think the internet helps people with disfigurement?

I feel the internet helps people with disfigurement to a degree. From personal experience I came across a group which helped support Burn Survivors and I now attend to invite people to my fortnightly swim sessions. I’ve found that some people with disfigurement like to remain private and tend to stay away from internet/ social media sites. The great thing with the internet is that people can interact with others going through similar situations as well as finding organisations such as Love Disfigure and Changing Faces.

How do you think the internet could be improved for people with disfigurement? 

The internet can be improved for people with disfigurement by creating forums to enable us to share information through individuals and organisations such as Love Disfigure. With technology readily available on our phones it’s important people are able to access information quickly. It is also important that the internet is able to recognise hate crime towards people living with a disfigurement especially on social media. 

What advice would you give to other people with disfigurement seeking to share their stories online?

If anyone approached me to ask about sharing their story online, personally I would offer to mentor them so they understand that they are ready to accept both positive and negative feedback. Sharing a story isn’t always the right thing to do and In the past I’ve seen people share their stories in magazines where words have been used to damage people with disfigurement. This is one of the reasons why I haven’t sold any stories to magazines as yet so I am sure that no one will be damaged by the words I choose to use if I do at a later date.

Aside from Love Disfigure, what else online would you recommend to people with disfigurement?

Aside from Love Disfigure I would share organisations dependant on the condition of the person whether eczema, vitiligo, burns etc. 

When I started Love Disfigure I reached out to many groups and organisations to allow them to understand what I do and what I plan for the future of disfigurement. Some of the contacts I chose to reach out to were Changing Faces Disfigurement charity, Katie Piper Foundation, Dans Fund for Burns, Birthmark Support Group, British Skin Foundation and many more. 

Where can we find you online?

Love Disfigure can be found on

Facebook group LOVE DISFIGURE,

Instagram love_disfigure

Twitter @LoveDisfigure

website: www.lovedisfigure.com 

You can also check out my BBC Woman’s Hour interview http://www.bbc.co.uk/news/magazine-40862546

Thanks to Sylvia for taking part.

 

What are your experiences of peoples’ misconceptions about disability? Please share your thoughts in the comments below.

 

 

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