H. Fergurson
Achromatopsia

My name’s Heather Fergurson and I’m a rod monochromat, and have Incomplete Achromatopsia  (I believe).  My parents first noticed my vision problems when I was a baby and I’d always stare at the sun, which was most likely the only thing I could see on a bright sunny day. So my mom put large brimmed bonnets on me. I would also squint in bright light and the nystagmus was apparent early on too.

After learning to walk I would often run into glass windows and doors that lead outside. I’d trip over curbs and cracks. And of course I couldn’t learn my colors. So my parents were told to go to a specialist in Kansas City, MO and at age 3-4 I was diagnosed with “Cone dystrophy”, which years later I realized after further research was a broad diagnosis, and that I was in fact an Achromat. 

I was prescribed dark red tinted bifocals with side shields. Needless to say the first pair mysteriously disappeared and the second found their way in the trash (sorry mom). I had vision therapists in my early life from that time on to help me through school. I remember having therapist come over and have me pick out colored objects and chase beeping balls around the front yard! I had a lady come visit me quarterly in k-6 grades to evaluate my needs for visual aids. I sat in the front row close to the chalkboard. When we had movies I sat on a desk to be closer to the TV screen. I tried large print books in 5th grade but they were enormous and too cumbersome to handle. I was pretty active, and was in gymnastics and dance. I rode a bike all over the neighborhood, and rollerbladed as soon as they came out. I also roller skated at the rink every Friday night.

I went to a camp for the Blind and deaf in 5th grade and water skied for the first time as well as repelled. Of course I hung out with the deaf kids since I was the only “blind” kid that could see! I spent my summers at the pool and often fought with the lifeguards over diving into the pool with my glasses on. Oh and I just loved the “raccoon eyes” I’d get every summer.  By Middle school my glasses found themselves stuffed in my front pocket most of the time until I absolutely needed them to read or see outside. I was too scared to try out for the school play because the stage lighting was too bright.

I tried out for the basketball team and got cut after the second cuts. I tried track, but I sucked at running, nothing to do with my vision. It wasn’t until High school that I could finally get involved with sports. I made the Cheerleading team both freshman and sophomore year (6 out of 100 girls). Then competed on the High school Gymnastics team for Junior and senior year. I was never as good as a sighted athlete but I did the very best I could and had fun.

The most remarkable and frustrating gift was my artistic ability. I was gifted in art at an early age. I won drawing contests and was constantly praised by my art teachers. I always struggled with colors but I’d ask if I needed to know the color of anything that wasn’t labeled. I could mix paints just by logic. An even amount of yellow and blue mixed, will make green. But I sure didn’t “know” it was green by looking at it. So naturally I liked drawing with pencils, charcoals and inks, anything monochromatic. I was always praised for my art, but looking back I feel it was more due to being a visually handicapped artist. I made decent grades but know I would have done better in Math if I could see the board. Heck a tutor would have done wonders, but that’s heresay. I graduated High school and a week later went to a rehabilitation program for the blind through the State to learn how to use low vision computer aids, tips for independent living and using public transportation.

It was a wonderful learning experience and I met many different types of people with different vision problems. I learned a lot over the two month program. I was able to attend College for free and given a new large screen computer and many new wonderful low vision aids and computer programs to use for my schooling. It was wonderful. I ironically studied Visual Communication in College and hoped to illustrate children’s books. I attended college for four years and during that time I lived on my own. I rode my bike everywhere on and off the sidewalk, using traffic rules and constantly almost being hit by people backing out of car spaces because I couldn’t use caution approaching them, since I couldn’t see the reverse lights in the daylight. I had a bus pass and used the bus as best I could. Although I’ve NEVER been able to read the bus labels on the front or sides of the bus to tell me where they’re going. I’d have to ask others waiting for the bus which bus they were waiting for, or I’d simply have to flag down every darn bus that passed by and ask them which frustrated many drivers and embarrassed the heck out of me. I even felt like getting a white cane to act as my red flag! I always seemed to have the Lord on my side and was able to befriend the bus drivers on my route and therefore they would lookout for me. I do remember missing the bus and trying to walk home from class to my new apartment and getting lost and since I couldn’t see farther than 20 ft ahead of me, it took me over 2 hours to find my way home, which probably wasn’t more than a mile and a half. That was scary and frustrating. Thank god for Iphones and gps! My experience as an Art major and in College itself, was a very humbling one. I had many obstacles and struggles and soon lost my desire for the degree in this field of study. I am still by nature a very gifted designer in many aspects of my life; creativity, art, crafts, fashion, and interior design, but I can never have a career in the field I love due to being colorblind.

I am now married and a mother of one. I have started to experience a whole new set of challenges to overcome, like how to get a 4 year old to a preschool program that doesn’t offer transportation. Or getting him to a playgroup or library not being able to drive or take public transportation. Not being able to diagnose an ailment by color such as a skin discoloration, pink eye, a bruise or mark. Is that blood or blue marker on his arm? So the older I get, the more obstacles I notice are a result of my colorblindness, than visual acuity. My acuity is 20/200-180 in low light, but take me outside and run the same tests and that’s another story!  I wear brown tinted contacts and combine them with polarized sunglasses outside. I also have magnified reading glasses.

I’ve never thought driving legally was an option for me. But I do own a Vespa scooter that I drive to the market or gas station up the road or to just cruise. I wear contacts, sunglasses and a full tinted helmet in order to filter light. I avoid high traffic or busy streets with lights. I also only drive on roads I’ve memorized from a car so that I know where stop signs are etc. You can only go 40 mph tops on a scooter, and can drive them without a license in most states.  I still get scared of other drivers being able to see me. I have the most fun driving at dusk.  I’ve always preferred activities at sunset. I have been able to actively play roller street hockey and be goalie as well. But unfortunately this window of vision gain is only for about a 2 hour time period at best.  

Being an Achromat makes you very strong willed, and humble. We are forced to ask for help to manage in a “color sighted” world. When shopping for clothes I’m constantly looking for color labels and if there aren’t any I must ask. I often buy outfits featured on a manikin or together on a rack or in a magazine. In the grocery store I’ve got to use a monocular for reading the aisle labels and have to ask for assistance if I can’t find an item on a shelf. Another obstacle is going to an office that makes you wait in line until your number is shown on a sign in red digits and knowing I’ll never be able to read it. Or boarding a plane and for the life of me can’t find the dang seat numbers above the aisles! I must say though, I have been traveling solo since age 14.  First, with full airport assistance until around age 18 when I started trying it on my own, and now 16 years later I can get around an airport like a pro with the help of sunglasses, monocular, and of course just asking a clerk. Even the simplest tasks can be difficult and potentially dangerous, such as answering the front door.

For the Iongest time I struggled with the fact that I have to answer the doorbell with my sunglasses on, what would people think? As soon as I open an outside door without wearing sunglasses, the backlight is blinding and I can’t see who’s at the door. I used to immediately invite guests inside, but this can’t always be a safe solution. I also could never see if the guest was wanting to shake my hand while introducing themselves, they were often left hanging (how rude). So now I know it’s another fact of life for me to need to wear sunglasses while answering the door. I have the same social discomforts as other Achromats, but have learned that in order to avoid them I’ve got to be honest and forthcoming from the beginning, (but I must admit, this has taken me 25 years to accomplish). So moving into a new neighborhood I introduce myself to all close neighbors and tell them of my condition and impairments and that if I don’t wave back at ya, I just don’t see ya. I also let them know I might need help with a ride every now and then. Same goes for Church or making new friends. I let people know up front of my handicap and then of course have to constantly remind them from that time on. Nobody remembers how blind you are when you’re not actually holding a white cane!  But for all the times I’ve had to ask for help, it still doesn’t get much easier to do. I’m so independent and don’t want to “need” to ask for help. I want to do things on my own. The only time I chose not to be forthcoming was in the workforce. I have worked since age 14 and some jobs I made without informing the employer of my vision, and others I did in the interview process. I never wanted to divulge too much information in the range of sight difficulties I had prior to being hired, so less was more. Then once hired, if I had an obstacle I did my best to find a way to overcome it on my own by low vision aids or making a larger printout or memorizing something. Or I went to my boss for a resolution. I always had a steady long term job because I was a hard worker and I also appreciated the jobs that I had, knowing my choices weren’t as broad as others. I found I wanted to prove my ability to do a job just as well if not better than my peers.

My biggest success is being a mother and I’m doing my best to figure out how to provide the best for my child while not being able to drive. I have a husband to depend on but he has a full time job and can’t do it all. But so far I can say I’m doing a pretty good job.