Heather’s story of growing up with aniridia in the USA

Photo of Heather

Heather

My name is Heather and I am a 29 year old American. I work as a solutions analyst at a software company completing special projects for our Chief Technology Officer. In 2011 my company transferred me from the USA to London to start their European technical support office. I have congenital aniridia, nystagmus and cataracts. In addition, both my eyes have had glaucoma since I was 13 years old. The visual impairment that has resulted from these conditions affects my life every day but not always in a negative way

Despite the number of eye conditions that I’ve had since birth and the glaucoma I developed as a child, I’m very fortunate to have fairly good sight, that has not degraded significantly over the years, and that has not yet required surgery. It wasn’t until I was an adult that I started to realise how the different conditions affected my sight and started to learn more about each one.

I am farsighted and have worn glasses since a child. I can’t read small print or print far away. My aniridia (having no iris) makes me sensitive to light. The conditions impact my depth perception and ability to focus. I have a null point directly in front of me due to my nystagmus that makes it much easier to read things that are in front of me rather than off to the side.

My mother and brother both have the same conditions, which have progressed differently for all of us. Semi-annual or more frequent visits to have my eyes checked have been a part of my life for as long as I can remember.

Who needs to drive

It was a unique experience growing up with a mum that did not drive, especially in America. My father passed away when I was young and we always lived in a very car oriented part of the country that did not have good public transportation, so getting to places was always a challenge. In many ways it was beneficial for me to be exposed to this challenge early on. Because transportation via car was not readily available I learned how to walk to the supermarket and other places or to take the bus when needing to go somewhere. We did rely on family and friends sometimes but in our daily lives we managed without help.

I grew up knowing that not being able to drive, although a challenge, did not have to control my life.  It is possible to live most places and still manage on your own as long as you’re willing to use alternatives. When I’ve lived in or visited larger cities, such as London or Washington D.C., where walking or using public transportation is the norm rather than the alternative, I have been initially very comfortable whereas people who are used to using a car have struggled to adjust.

Education

I went to a mainstream school throughout my education. The biggest challenge was always seeing the black board. Although my teachers were always told that I couldn’t see the black board they would often forget to ensure I had a paper copy of the notes or to say what they were writing. This made it difficult to learn from a lecture because I would have incomplete information that didn’t completely make sense until I could copy the notes from a friend.

Over the years I adjusted to learning without being able to see the black board. Instead of using lectures to understand the subject, I’d read the materials carefully and ensure I understood what I was reading. Generally this practice has worked very well for me as long as there is printed material to use. I sometimes struggle when learning concepts that I can’t read about and have to learn from someone teaching me though.

Printed material provided its own challenge. Usually school materials were provided in a size I could read. As I got older the amount of material I had to read got larger which was challenging at times. It wasn’t until recently that I realised my nystagmus was probably a large contributor to this because of the effort to focus for long periods of time. During university I used a CCTV to enlarge the text of textbooks so I could read for long periods of time more easily. My Kindle provides me the same benefit now when reading for pleasure.

Employment

It is undeniable that being visually impaired has challenged me in obtaining employment and being employed. It has been advantageous as well. I work with technology which has helped with some of the challenges but presents its own.

When I was young I was able to take advantage of several programs designed to help the visually impaired gain job skills and experience. Before graduating from university I had several internships that I would have struggled to get or not have gotten if I wasn’t visually impaired. Additionally, I was able to take advantage of educational programs for the visually impaired to learn skills, such as typing and the use of computers, several years before my peers did.

I was educated about my rights for accommodations when I started looking for my first full time job and continue to be reminded of them, but knowing my rights and using them have not been the same thing. I’ve only worked for two companies for an extended period and outside of having the computer screen closer to me the only accommodation I’ve asked for is screen magnification software. I chose to wait until after I was hired to ask for the accommodation.

There was never an ideal time to bring the topic up during the hiring process and I wasn’t even sure who to bring the issue to. I ended up just bringing it to the person I was initially in contact with at the companies in the end. In both instances neither company had hired a visually impaired person before and had no knowledge of screen magnification software. They both relied on my knowledge to tell them what I needed and how to accomplish it. Both companies accommodated what I needed, but neither became proactive about ensuring it continued to meet my needs or that it was the best way to meet them. It is still awkward when I have to ask for a new version of the software or for it to be installed on a different machine because I never work with the same person.

I still face challenges on a daily basis at work due to my visual impairment though. Regularly I work with other employees at their computer and they expect me to be able to see and read what is on their screen. Often these are short or one off interactions so I don’t explain my impairment to each person. Instead, I have learned to be able to work and help them without being able to read what is on the screen. Asking them questions about what they see (rather than directly asking what is on the screen) has proved useful in addition to facilitating what we are doing. Having a laptop that I can bring with me to their computer has helped as well. I have to employ the same methods when on site with customers.

The technique I learned in school of understanding by reading rather than someone teaching me has proved a huge advantage at work. I am able to understand documentation and work out concepts on my own more easily. Additionally, being visually impaired has taught me to listen very closely to catch things I can’t see. Unintentionally I will memorise the order and placement of things on the computer because when helping other people I may not be able to fully see what they are doing and I have to rely on that knowledge to effectively help them.  These techniques have allowed me to excel at the work that I do.

Read part 2 of this story

This is the first part of an article by Heather written for the charity Nystagmus Network and published in the 100th edition of their newsletter Focus in October 2013.

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5 Responses to Heather’s story of growing up with aniridia in the USA

  1. Chris Engel says:

    My name is Chris. I am 34 years old. I live in New York State USA and I have nystagmus. I have been able to graduate with a college degree, hold a full time job in the sports radio business and because of my eye doctor. at least get my driving permit as I am borderline with my vision. I do play by play for sports games. Some games I use binoculars, but most I don’t. I always felt I had to do extra to earn my place in the industry and wish Heather the best. I the trials you went through are the same I did but we made it. I always thank my family including my mom, dad, brother, siser. and of course my wife and two kids. They do make life worth it.

    • heatheranuk says:

      Hi Chris,

      Thanks for your post. You should be very proud of your accomplishments with the extra work that you’ve had to put in to make it happen. As hard as it is at the time, I think we benefit from working hard for what we accomplish because it makes us stronger than people who don’t have to work as hard and we appreciate what we do accomplish more.

      I admire your willingness to be a driver on the road with everyone else. I believe with a bioptic I would be able to but I don’t want to deal with most the drivers out there. In the USA it can be a bit of a challenge without a car in many cases though.

      Best wishes to you and your family.

      Heather

  2. Paul Russell says:

    It seems that I am not the only one with those 3 conditions, although I don’t know if I have glaucoma. I had to wear glasses with blue lenses which was suppose to make me see a bit further and protect my eyes from bright light (wrong and wrong). Got rid of the glasses while I was in college and found that orange and amber coloured lenses are better for people with ankridia and cataracts couple of years ago..

    I had a similar problem at school, where I was sat at the front and at primary school, I had to stand up, walk to the board, memorise at least 3 words, walk back to my desk, sit down and write those 3 words and repeat the process. It was slow and I was getting in everyone’s way and the teacher had to wait until I got most of it done before pulling the blackboard up. I now suspect this was part of the reason I got bullied at school.

    Trying to use the computers at school was nightmarish and when I went to the Royal National College for the Blind in Hereford the computers was a bit better. When I worked for the Walsall Coiuncil in the mid 90s for a short time, I had to use a computer different to the rest but it did help me to do the work. Now in the 2010s computers have a magnifying app already on them, which is a HUGE help and so are some of the apps on smart phones.

    Good luck in London Heather and if you need a PA who’s good with making the tea, just employ me please, hee hee.

    • heatheranuk says:

      Hi Paul,

      It’s always nice to hear about similar experiences. It must have been quite difficult to have to walk up to the board to read it. I’m not sure why a teacher would have thought that a good idea. Every experience makes us stronger I guess. I have also found that amber sunglasses are quite good. Thanks for your post.

      Kind regards,

      Heather

  3. Pingback: Heather’s story of an American in London | Aniridia Network UK

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