A guest post from Roselle Potts, Chair of the Albinism Fellowship on International Albinism Awareness Day 2019.
‘The prejudice and struggles facing people with albinism are sadly as present as ever in 2019…
‘International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has been made in recent years.
‘As a rare genetic condition that affects people’s eyesight and gives them distinctive pale hair and skin, albinism brings its own specific challenges.
‘Since many people with albinism have nystagmus as one of their visual impairments, I’m sure members of the Nystagmus Network – a charity we work closely with – can fully understand how challenging things can be.
‘Society has rightly moved forward in terms of recognising the rights of people with disabilities in the last few years and there has been greater effort made to acknowledge the special problems experienced by people with albinism from ethnic minority backgrounds, including by the Albinism Fellowship. But more still needs to be done.
‘It is true that our members in the UK and Republic of Ireland don’t suffer the extreme prejudice and live with the risk to their lives that people with albinism in parts of Africa must face, but life can still be a daily struggle.
‘For parents with a newly diagnosed child with albinism it can be difficult to access the correct support from the NHS.
‘Since albinism is such a rare condition – we estimate just 3,000 people live with it in the UK and Ireland – it may not even be diagnosed correctly.
‘If parents do get the right diagnosis, they may still hear urban myths such as “you’ll never be able to take your child on holiday in the sunshine” (simply untrue, but parents need to travel prepared with shades, Factor 50 sun cream and a wide brimmed hat) or “they will never be good at sport.”
‘This is where the Albinism Fellowship comes in. As a positive and sociable volunteer run charity we are the only national charity in the UK and Ireland that exists to support people with albinism and their families. We are planning to launch our new website on 13 June 2019. Here, people can find out how to join the Albinism Fellowship and obtain a useful booklet called ‘Understanding Albinism’.
‘When the child with albinism starts at their local primary school, there may be a lack of availability of magnifiers to help them see textbooks, or no teaching assistants available.
‘While we hear encouraging stories of fantastic teachers and schools supporting kids with albinism, we also still hear disturbing stories of teachers simply not understanding albinism, or being willing to provide extra support.
‘Since this is 2019, this factor is simply not acceptable in a developed country like the UK – imagine the sheer distress the child and his or her parents experience as a result. At our Adult and Family Weekend Conference from 18 to 20 October 2019, we will have expert speakers on education rights and mobility as well as loads of fun activities for children and teens with albinism and their siblings.
‘Adults with albinism experience their own battles throughout their own lives, too. This can be misunderstanding of their condition, prejudice or the lack of access to the same career opportunities that their fully sighted peers would enjoy.
‘We will be hosting bespoke sessions again for adults with albinism including discussion groups during our conference this October. This will be a brilliant weekend with the theme “This is Me!” to encourage all people with albinism to be confident in who they are.
‘The Albinism Fellowship will continue to help people with albinism “still stand strong” – in keeping with the theme of this year’s International Albinism Awareness Day.
- On International Albinism Awareness Day, Thursday 13 June 2019, please use social media to show your support to people with albinism around the world. Use the hashtags #IAAD and #IAAD2019 and tag the Albinism Fellowship (@Albinism) and we can share your messages across our networks
- In conjunction with International Albinism Awareness Day, the Albinism Fellowship’s summer barbecue and get-together will be in Carshalton, Surrey on Saturday, 15 June, from 11.30am-3pm. The event gives people with albinism and their families the chance to socialise, catch-up with news from the Albinism Fellowship and enjoy some tasty food. This year, the summer event is at a new venue, the Church of the Good Shepherd, a short walk from Carshalton Beeches railway station. People attending should bring their own food for the barbecue. Attendance is free, but please confirm first by email with firstname.lastname@example.org.