welcome back ladies and gentlemen to my #DisabilityQ&A Series. Today we have the lovely Elin sharing her story with you.
We met on Twitter and I love reading her blog, so much positivity and great Beauty posts.
Now over to you Elon! 🙂
Tell me about yourself:
My name is Elin, I’m 18 years old and I live in the UK. I am currently working as a Trainee Community development assistant for the RNIB/Action for blind people and I really enjoy my job, I love working within the sight loss field. I have 2 main hobbies, one being music, I play a number of instruments including the piano, harp and guitar and I also like to compose my own songs every once in a while. Another hobby of mine is blogging, it’s a huge passion of mine as I love writing but I also like to share my interest in beauty and fashion with the online community whilst also attempting to raise awareness of visual impairment along with other disabilities in the hope of changing people’s perceptions of disability.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I have two disabilities the main one being my visual impairment, I have a condition called Retinitis Pigmentosa (RP) and I am registered blind Severely sight impaired.
I also have a disability known as Chronic fatigue syndrom/M.E.
Have you had your Visual impairment / disability from birth?
I was diagnosed with RP when I was 6 years old and I was diagnosed with Chronic fatigue when I was 15.
Which terminology do you prefer: Partially Sighted, Visually Impaired,
Sight Impaired, Severely Sight Impaired or Blind?
Visually impaired or Severely sight impaired.
Do you have a cane, Guide Dog or neither?
I have a cane and I’m currently on the waiting list for a guide dog.
If you could extinguish your disability, would you? – If not, please
I think I would.
For those who do not know much about your VI what can you see?
My vision is blurry but I can see some things. I am able to read large print on good days, I can see movements and I can also see objects when they’re not to close or not to far away from me.
How has your disability effected you?
It has affected me in A number of ways socially, I’ve felt socially excluded at times and I often feel isolated. As I can’t see people’s faces I can’t go up to someone and start a conversation and this is something that has affected me a lot. My Chronic fatigue has also stopped me from going out at times because I’ve been to tired therefore I’ve missed out on social events which has again made me feel isolated.
Chronic fatigue syndrom results in severe tiredness and weakness and can also make me feel very light headed meaning I sometimes can’t complete certain tasks because I’ve been too physically drained to do them.
My disabilities can make me feel very low but I have learnt to maintain a positive outlook on life. Although I do have my down days I find it’s easier to deal with them as i grow older.
Do you think your disability has made you who you are today?
Yes definitely! I would be a completely different person without my disability, it’s helped me in so many ways and helped me to be a positive person. I don’t judge people, or I try not to, because I know what it feels like to be judged and it’s definitely not a nice feeling.
Is there a particular question you get asked often because of your
disability? If so, please explain below.
“How much vision do you actually have?” – when I tell people that I am registered blind/severely sight impaired some assume that I have no vision at all so when I explain that I do have some remaining vision they are curious as to how much I actually have.
What are the positives of having a disability?
In my opinion there are a number of positives, meeting fellow disabled people is a great positive as you can relate to those people and become really good friends.
Another positive is that you can help and inspire others who have a disability and make them realise that their is a positive side to everything, I love helping and motivating other people.
What are the negatives of having a disability?
Being treated differently within society and not being able to see certain things that sighted people take for granted.
What would you say is a difficulty for you being VI / disabled?
Not being able to go anywhere on my own without learning the routes, having to depend on other people if I want to go places. Not being able to do certain things if I’m too tired or weak to do them.
As a person with a disability, what are the things you face on a daily /
weekly basis that frustrate you? *In your home
Not being able to find things sometimes for example if they’ve been moved.
*outside your home
Not being able to go somewhere spontaneously on my own, I can’t just hop on a train whenever I want to because I would have to have someone with me. Also not being able to go to unfamiliar places on my own because I wouldn’t know my way around and I wouldn’t be able to see to find my way around.
Are there any tips or tricks you use in daily life you’d like to pass
on to another VI/ disabled person?
Label your make-up products with braille labels or with a penfriend, it makes finding the products you want to use a whole lot easier.
Keeping your clothes either colour co-ordinated or together depending on what they are.
E.G. keeping t-shirts together, dresses together etc.
Do you use Assisstive technology in your daily living?
I use a lot of assistive technology, I love Apple products because of the accessibility so I use VoiceOver and the zoom on my phone and laptop. I also use ZoomText at work which is a screen magnifier and reader.
I also use a number of accessible apps such as Tap Tap See, NantMobile Money reader, TextDetective, Overdrive and a number of others.
I also use a liquid level Indicator from time to time.
What piece of advice would you give to someone newly diagnosed? Or going
through a deterioration in vision / or mobility?
It’s hard, I know it is from personal experience but just know that you’re not alone. Living with a disability isn’t easy but you shouldn’t let it stop you from doing the things you love in life. If you feel like you’re struggling then it might be best to talk to someone, don’t struggle on your own, talking always helps. Don’t let your disability define you and don’t let it be a barrier,
I always say ‘no matter who you are, you can live a life without limits’.
Any advice you’d like to give to a person with sight / no disabilities?
Don’t judge people with disabilites, we’re not different to anyone else in this world.
Also, don’t assume that we disabled people need help because most of the time we might not need it and can feel a sense of discrimination if people assume that we can’t do things for ourselves. Even though we know you mean well and we appreciate any support it’s always best to ask before assuming that we need help.
Did you seek out any specialist services / charities to help you and your
family deal with your situation?
My family and I haven’t used a lot of services for help but we have gained support from the Amber Trust, VICTA and the RNIB which we are very thankful for.
Where can people find you out in the world?
Blog : https://myblurredworld13.wordpress.com
Twitter : @myblurredworld
Instagram : @myblurredworld
Email : firstname.lastname@example.org
❤❤ Thank you so much for taking the time to be interviewed! I love and appreciate your honesty, sharing your thoughts that life can be tough, difficult and stressful but with the right support, determination and positive mindset you can achieve what you want to!
I also love that you have listed some of the technology that you use, and how to keep things organised! I’m sure lots of people will find this very useful! ❤❤
If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following: