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Dublin: 14 °C Monday 14 October, 2019

Life with albinism: 'Being shouted at, laughed at and pointed at regularly'

The sad thing is this has happened so many times I’ve accepted it as normal, writes Sinead McManus.

Sinead McManus Blogger and disability activist

IT HAS BEEN a full year since I wrote an article for The immediate response was positive, helpful and encouraging. It gave me hope.

That response makes it even harder to write now that 2017 was my worst year for prejudice and discrimination.

Subtle prejudice in job interviews

Things I thought would turn everything around didn’t work out. I have faced a lot of the same problems I mentioned last year, what I like to call the subtle prejudice. This includes awkward looks, stuttering questions about how I would do certain things, or if the light is going to affect me. These are always asked in a very non direct way.

I usually apply for reception roles, although not in the hospitality industry, because I know what I can handle and what I can’t. I am limited regarding locations. Being visually impaired I have to rely on public transport which is quite frustrating.

I squint noticably as I am very light sensitive. I’ve been asked:  ”Are you ok?”; “Will we move?” and ”Do you always squint?”

A couple of my interviews have been cut short. Also, people notice my nystagmus (shakey eyes) and this gets worse when I’m concentrating. I’ve been asked if I’ve something in my eye and when I try explain they’ve cut me off and avoided the topic. I never hear from them again.

I’m happy to go into detail 

The sad thing is this has happened so many times I’ve accepted it as normal. I’d prefer to be asked directly. I’m happy to go into great detail. If a problem is ignored, it remains the elephant in the room and people seem to fear that elephant.

Because I was horrendously broke in the middle of the summer, I didn’t have my eyebrows and eye lashes tinted, so I looked obviously albino.

Last year I wrote about being shouted at, laughed at and pointed at regularly but, I had forgotten how bad it can be when you blend in even less. I will never understand people who react like this toward any human, whether they have a visual impairment or they are “normal”.

I try to see the good

I am quite optimistic by nature and I try see the good in every situation. But when these things go on so long, and so many people tell you you’re not good enough, not worthy, not capable, it can take its toll on you.

I am lucky that I have an amazing support system with the best people around me and I am happy in my world. But I have sobbed. I have not wanted to get out of bed in the mornings. I have felt useless. I have felt anxious about everyday things and I have questioned my own abilities.

I am 28 years of age. My friends and siblings have good jobs and independence. Meanwhile I’m kind of stuck in limbo. Although I write and blog and take pictures for my self care, some days are still hard.

I’m not the only one

I know I’m not the only one out there. I have friends with various types of visual impairments and disabilities who are all extremely educated and capable and face the same prejudices that I do.

I also know that the “normal” unemployed person who is actively seeking work faces a lot of these problems too and I empathise with them.

I still remain hopeful. I still see a life ahead of me full of happiness and success. I hope we all think a little more, ask questions, try and understand and accept everyone for who they are.

Sinead McManus lives with albinism. She has a background in counselling psychotherapy and lives in Leixlip. 

Read: Living with albinism: ‘I can’t go into town without someone pointing or laughing at me’>

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About the author:

Sinead McManus  / Blogger and disability activist

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