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Living with albinism: 'I can't go into town without someone pointing or laughing at me'

All people with albinism are subjected to prejudice, but it is devastating to be rejected at job interviews too, writes Sinead McManus.

Sinead McManus.
Sinead McManus.

I’M NOT ONE to share a lot of personal information with the public, but today I really felt that something needs to be said. Or at least that we need another person to say it again.

I am a 26-year-old woman who happens to have albinism. Albinism is a comparatively rare genetically inherited group of conditions. It causes pale skin which burns easily in the sun, virtually white hair, very severe short-sight and photophobia (a severe sensitivity to light). Worldwide, one in 20,000 people is thought to be born with the condition.

Living with albinism means overcoming visual impairment, a propensity to burn and coping with being visually distinct. But, apart from that, we are absolutely “normal” in every way.

2017 in a narrow-minded world

In 2017, why am I living in a world with so many people who are still so unaware and narrow-minded? I’m asking people to think about this. Talk about it.

Maybe you know someone from a minority group, like someone with a visual impairment, hearing impairment or physical disability. Do they deserve the life they want and are capable of? Not everyone looks “different” and nobody deserves to be treated as if they are different.

I have had so many knockbacks and faced so much prejudice in my life. I can’t go into town (that’s Dublin) without at least one rude comment being shouted at me. Or someone pointing and laughing at me. It’s not immediately noticeable I am albino but unfortunately some people realise and are too ignorant to treat me like any other person on the street.

Job hunting with my condition

I have applied for over 200 jobs in recent months and met face-to-face with over 50 people, some for company interviews and some agencies. I’ve done numerous phone interviews as well.

Yes, I have got through to second or third rounds interview and yes, some interviews have gone better than others. At many interviews people have said things like “are you okay sitting in that light?” Or they stare very noticeably at my nystamus (shaky eyes) – something that I cannot control.

Am I disputing that I just wasn’t right for some of these roles? Absolutely not. But to realise that even a fraction of these people are so unfamiliar with someone who isn’t “normal,” and are worried about how to train me, is so disheartening.

I don’t need to alter anything within my workplace. I have never had issues doing my job, seeing things or made any mistakes due to my visual impairment. Yes, we all vary in our needs but nobody needs too much support or anything that is that different to the average new employee. And even if anyone did, does that mean they don’t have the right to the job, just because a fraction more effort might need to be made by employers, or trainers?

I have mainly been applying for reception roles as this type of role is something, even with my albinism I can still excel at and enjoy. I have asked for a lot of feedback and haven’t received any negative or even constructive feedback. It’s all been very positive. This is why I find it so frustrating.

Rejection affects mental health

Unemployment and making somebody feel inadequate hurt. It’s no wonder so many people struggle with their mental health as a result of them.

I feel extremely isolated at the moment as the people I surround myself with are all working and doing well. I feel very left behind and it’s hard to stay upbeat and positive when you’re spending an incredible amount of time alone and struggling.

Am I that different to my sister? My twin brother? My friends? Any person on the street? No I am not. Does it slow me down in work? No. Does it cause hassle or problems for other people? No.

I hope for the life I want

I do hope. I hope for the life I want, the life I deserve. I have worked hard my entire life, to keep up, so I can have the most “normal” life I can.

I have met some amazing people over the years who have taken an interest in me and who are understanding. I hope that I meet more of them. I hope they spread their good nature and in turn create a more understanding and positive environment for us all. We can all benefit from putting ourselves in someone else’s shoes and walking around in them.

Most of all I hope this reaches someone who needs to hear it, hear they are not alone in whatever obstacle they face. I hope that we can all live full and happy lives.

Sinead McManus is a 26-year-old woman who happens to have albinism. She studied counselling and psychotherapy. She loves to travel, read and spend time with the people in her life.

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