Welcome back to my disability Q&A campaign! If you haven’t already, please check out interviews 1 and 2 🙂
This interview is brought to you by Ellie, a fantastic young woman and someone I am proud to call my best friend! She is very interesting and I hope you enjoy reading her interview, and learning about her disability.
So without further ado:
Hey, I’m Ellie, 25 and live in Hertfordshire. I’m a Midday supervisory assistant and teaching assistant at a special needs school for children with moderate to severe Learning Disabilities. I like horse riding, playing the flute and violin, watching si-fi based tv shows, relaxing by listening to music or watching youtube/films/TV shows and just have some quiet me time as work can be hectic.
Now we know the basics, can we learn a bit more about you?
*What is the medical reason you have a disability?
I have a Visual Impairment called Occularcutanious Albinism type 2
Have you had your Visual impairment / disability from birth?
Yes as Albinism is a genetic condition
Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight Impaired, Severely Sight Impaired or Blind?
I personally prefer Partially Sighted.
Do you have a cane, Guide Dog or neither?
I have a cane but I only use it when I’m in new places and even then I don’t use it often.
*If you could extinguish your disability, would you? – If not, please explain why.
In a way I would as I would be able to drive, it would make reading packaging easier, my work wouldn’t be impacted the way that it is and my eyes would not become as tired as quickly from straining. However at the same time I wouldn’t because if I hadn’t had the experiences that I’ve had because of my sight then I wouldn’t have met the people who are most important to me and I would be at least partially different personality wise.
For those who do not know much about your VI what can you see?
I can see what everything is. It’s more the detailed perception of things that I find difficult to detect. I also have problems with distance therefore I may be able to see that someone is moving or using a hand gesture in the distance but I find it difficult to make out exactly what it is and the detail and facial expressions can be more difficult to make out. It’s hard to explain when you are so used to only being able to see what you see and have nothing to compare it to.
How has your disability effected you?
*Socially – I think there have been times when I have been more isolated because I have found it hard to interact with others because of not being able to detect facial expressions and body movements and therefore know whether someone is looking and talking directly to me. When I am completely comfortable with someone this does not bother me in the slightest but meeting new people can be slightly intimidating at times.
*physically – I do have to be careful sometimes because I also have difficulty with depth perception and photophobia so walking down steps or walking in bright sunlight can be a little daunting or very painful. When walking in the street of a new place and there is a difference in colours on the pavement of a pedestrianised area can be a little disorientating at times because it can make me jump or flinch occasionally because I think there is a step when there isn’t one. So sometimes there will be moments when my walking will slow down or become slightly erratic. Also because my condition means I have little pigmentation in my skin and hair I have to be very careful of the sunlight as I can burn ridiculously easily which means in the summer months I am lathered up so I would give a moisturising cream a run for its money.
*Mentally – I think the whole isolation prospect and becoming nervous around new people and the idea of looking different and thinking that people will stare at me because my hair colour stands out has had a negative impact on my mental health. It can sometimes be a vary lonely place when few understand where you are coming from and the challenges you face or even worse stereotype your disability and patronise you and try and help but don’t know how much or little help is needed so overcompensate which can at times make you feel trapped and a frustrated.
Do you think your disability has made you who you are today?
I certainly think it’s had an impact on my personality and the way I see or do things. I’m much more open minded and willing to learn and ask questions to get to know someone’s disability and who they are rather then just think they are incapable of anything. I think it has had a partial effect on my working life in terms of wanting to work with people with learning disabilities, especially in a school setting and helping children learn in a safe environment to become who they are without the constraints of a mainstream environment.
Is there a particular question you get asked often because of your disability?
I do get asked by sighted people what I can see, how many fingers they are holding up, if my vision is blurry and how I manage to get around my environments. A lot of people have said to me that they don’t think that I am visually impaired and are surprised or a little
What are the positives of having a disability?
Free bus travel and reduced train fairs. Being able to teach people that having a disability isn’t a necessarily an all bad thing it’s just different.
What are the negatives of having a disability?
For me a disadvantage would be knowing when to ask for help and not to be ashamed to do so. Having to rely on public transport or others to get you from a to b, not being able to read the boards at places like train/bus/airports or whats on the specials menu boards at restaurants.
What would you say is a difficulty for you being VI / disabled?
Not being able to see things like cyclists on the road or pavement and small children who are on scooters who go really fast and almost crash into you because you don’t see them coming as quickly as a fully sighted person.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home – I still live with my parents and I find that in the house at large if they move something, say a basket or the hoover and I wasn’t expecting it to be there it can be quite frustrating if I catch my foot on it or if my toothbrush as moved it can take me longer to find it. Generally though it will be things like me putting my phone or keys down somewhere, subsequently forgetting where I’ve put them and needing to take a little extra time to find them.
*outside your home – as I have mentioned before cyclists and children on scooters can be quite a disorientating thing when generally walking out and about to add to this list dogs, especially small ones that are not on the lead can seemingly come out of nowhere and through me at times. Other then that it is the changing in light that can be quite frustrating i.e. if it’s a sunny day and a cloud passes of the sun suddenly then passes just as quickly it can take my eyes a good few seconds to completely re adjust.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I don’t really have any particular tips or tricks I generally just seem to muddle through. If there are any particular things they are such ingrained habits that I’m probably not aware of them.
Do you use Assistive technology in your daily living?
As I do have vision I only really use a hand held magnifier for general purposes the screen magnification on my phone computer and tablet and if and when I ask people for help.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
Speak with someone you trust. Don’t keep these feelings bottled up. If you are still in education let people know what you can and can’t see and what is actually effective for you as your educators won’t know unless you tell them. It is the same for work. If you really need adjustments only you can truly know or find out through experience what you need. Don’t be afraid to ask for help when you need it but at the same time you are still a strong independent person and don’t become dependent it is about learning to cope and find strategies to live and cope with your new situation.
Any advice you’d like to give to a person with sight / no disabilities?
Don’t be afraid to ask questions however stupid they may sound. The general rule is that someone is probably more likely to open up and be responsive to you if you ask rather than just assume and either avoid the topic completely because of fear or overcompensate and assume they can’t do a particular task or anything. They are likely to be able to many things that you may not expect them to do so never pre judge someone or assume anything. Don’t stereotype or patronise as that is the worst reaction you can have to someones condition and they most likely won’t thank you for it.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
I went to a specialist RNIB school for my sixth form years up in Worcester I also do utilise the RNIB shop in Judd street London for low vision aids. Through one of my friends I do occasionally gate crash a sight concern meeting in her home town which is always a laugh
Where can people find you out in the world?
I am on Facebook – https://www.facebook.com/eleanor.askew
I also have a blog page – https://journeyofthemindblog.wordpress.com
What an interesting interview! It’s amazing that after all these years, I am still learning new things about you Ellie! Please don’t forget to follow ha links… And why not share the love? Leave her a comment below, I know we would both truly appreciate it!
If you or anyone you know would like to get involved in my campaign please do not hesitate to contact me on the following:
Twitter: Using the Hashtag Disability Q&A.
From now on each disability Q&A campaign shall be released on the 1st and 15th of every month, I have been very lucky with the influx of people wanting to participate, and as my regular readers seem to enjoy this series, I thought it a shame to only release one every month. If you are not a regular reading yet, but think these entries would be of interest to you, you are welcome to subscribe to my email list, which I would of course be extremely grateful for!
Many thanks again to Ellie, I hope you enjoy this interview as much as I did! 🙂
See you next time!
Much love, Sassy x