Brandy’s story

This is my experience with finding work and keeping it after vision loss; hopefully it will ease your mind at little.

Brandy is in the US so the links wont apply to the UK but the information is still relevant.  If you are in the US like a few of out members they may be useful to you.

“The bottom line is most of us can keep working with the right tools, a little help, being flexible and open minded because rarely is their only one way to accomplish a task! Some jobs, cabbie, truck driver, bus driver, bench jeweler, welder are what they are, and reality is what it is. But maybe your sight will stay good, but reality is most get night blindness or severe glare issues even if they retain good vision.

So learn your options. Big businesses are better then small, when you have a disability. Most disability laws and protections exclude small businesses with less then 100 employees, like FMLA, and requiring a business to accommodate reasonable needs like bigger monitor, low vision keyboard or task lighting for your desk. FMLA coverage is available after 1 year’s employment and 1250 hours worked, so even part-time workers are covered. Briefly it protects your job so you can take days off for appointments or treatment, leave work early because the drugs make you tired, even when you run out of vacation time. Some states even provide more coverage for disabled workers. Businesses receive tax breakes for hiring or retaining disabled workers. Help them earn it! Learn what’s out there with protection from the federal and state!

Here’s my story work wise. BCR was diagnosed in 2002. I was a bench jeweler and designer in NYC for 28 years. As I developed vision issues I simply hired staff to do the parts of detail work I could no longer do. This worked well until 01/05. I suffered 2 major permanent vision losses in 1 week. First a major bleed destroyed 2/3 of one eyes vision all the center sight, and I went colorblind in a matter of days. I had to sell my business in mid 2005 as reality was my unique skills were my business.

For a year I was stuck in all that I had lost. I started working full time as a jeweler at 17, it was gone at 45. I felt I had no marketable skills, and was just a burden to husband.

One day I snapped out of it. I bought a large screen for my home computer. I took every computer course at the community college. I brought my folding OTT light to class. At the end of my 1st class the instructor asked me to stay, he asked about my sight. Then he asked me to wait for a minute while he made a phone call. He came back with a name and phone # for me to call the next day.

Greg had lost and damaged sight from a car accident 25 years ago. He lectures at management/human resources seminars for big businesses about dealing with disabled employees and adaptive technology. He asked if I would meet with him and allow him to do an assessment of my skill potential. I jumped at it. One by one he added adaptive technology and retested me. All the items are relatively cheap. A low vision keyboard, hand and stand magnifiers with the right power and type of lighting, glare screens for CRT monitors and so on. He showed me how to screw with all the computer settings, and more importantly for adjust font sizes and setting that changes almost all text on the web to a type I really found to be the best for me to see. That by using Internet Explorer to access the net I could enlarge every single page. The last thing he did was give me a list of great places for me to work in our area.

A few months later I was employed at a major hospital in a clerical position, where I worked on the computer all day. From day one they have been outstanding with my needs, big screen, low vision keyboard, task lighting, Dr’s appointments, everything. My second year there, I needed more light then task lighting could provide. My work involves the electrical shop. I went and asked the head electrician what he could do for me. That shop starts work at 5am, the next morning when I came to work my work area had lighting like a runway, they had changed all my ceiling fixtures.

Over the past few years my vision has gone up and down, and the job worked with me. For 5 months last year I had 20/400 vision. I had developed pneumonia on Zenapax and the infusions had to stop for a while. Immediately a massive uveitis flare set in. Steroid injections/drops were the only treatment options because of the pneumonia, followed by my existing baby cataract going into overdrive and aging years in a week in my seeing eye. That Friday I told my boss that I had to stop working until my Uveitis flare was over and cataract surgery could happen. Best case was 4 weeks before surgery would happen then at least 2 weeks after surgery. He asked me if I had enough sight to come to work and move around safely, forget about the work part, and I did. The day before he learned that our upfront person was having unplanned open heart surgery and would be out for 8 weeks. He would be overjoyed if all I could do was handle the phones and assist the temp for my job instead. It all worked out beautifully. The week the other person came back I had surgery, and my temp was very comfortable in my job and stayed until I was back full-time.

I know my experience is not unique. For every job that might screw you there are tons that will work with you. The things out in the market that improve our ability to work are many. But you have to go and look for them. With a Dr’s note stating a vision impairment, call you local Vocational Rehab office about low vision training. Cost ranges from free to a sliding scale by income. It’s in your states interest to keep you working and paying taxes.

Google to see if there is a Lighthouse for the Blind near you, call the Lions Club they are HUGE in vision rehab and helping the low income with eye treatment. Google low vision showroom and where you live, look for a low vision optometrist in your area (see links below).For task lighting I love OTT lighting, there are so many styles, find a lighting showroom near you and experience them, then get the best price on the web. Replacement bulbs are easily available. There are tons of small adaptive things you can buy and do at home and work to improve your life.

But you have to be proactive. Learn what you can do to be a better employee and your vision not be an issue. Work arounds are everywhere, is my experience. Look around at work at the other jobs and what they entail. You might find one that will be better suited to your vision if it changes, and in my case pays better. This was the smartest thing I ever did. The job I have now pays good, is nice and challenging. More importantly my boss allows me to work my 40 hours any way I want. For me this means that I can use a vacation day for my appointments, or work 4 x 10 hour days, or work on the weekend, always my choice. I leave early or come in late if the weather sucks for driving, I went to him before I applied for the promotion, and I put my needs on the table. He told me the job was mine for the asking. That he would do whatever it takes to have me move into his dept, my work ethic and people skills far outweighed my limitations.

One of the best things you can do to keep working and enjoying life is have specific glasses for your regular tasks. I have distance, computer, sewing/craft and reading glasses. I set up my home and work computers so the keyboard and monitor are the same distance as they are at work. Small things can bring major improvements. Getting the best task glasses is easy. If you do the task sitting bring the measurements from your eyes to the task as you’re doing it or as you used to do it before your sight change. The right script will bring a positive change; you might find that bifocals are needed to do it best, what ever it takes.”

NB:  The links below of  assorted info are relevant only if you live in the US.

FMLA info:

Types of low vision keyboards and overlays, my keyboard/keys are beige with bold black lettering. For me black sitting on a black tray was no good, but many people seem to like the black with white or yellow coloring. I can’t see yellow (I see a dull white instead) and I think that’s why that board is not right for me:

Rimless magnifier with LED light, I own 7 of these no joke. For at work, bedroom, kitchen, home computer, couch, and in my purses to go everywhere with me! Replacement button batteries are at Radio Shack or the net. The only real issue is the handle is dull gray so it can be hard to see when you put it down. Instant fix for this and other tools that blend into their environment on you. Hardware and auto parts shops sell all kinds of bright and/or fluorescent tapes in different sizes problem solved:

Vocation Rehab by state:

American Optometric Association – look for low vision specialists for your next eye exam

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