On Multiple Disability: The Bare Bones of my Story

By Steve Richardson

At our recent National Convention, I was invited to chair a session on the issues and challenges of living with more than one disability. Possibly the most notable question raised was “why should those who identify as having one disability care about these issues?”

Another question I might ask is “why is it so important for me to label my condition?” Often when we meet to talk about disability, the concern is not around the individual cause, but focussed on areas of common impact. I have two completely different, but equally important disabilities, blindness, and fragile bone structure.

Each of these on their own has a significant impact, but the combination of the two sometimes means that I face problems and situations that others may not need to deal with.

I don’t share this story to elicit sympathy, nor do I use this forum to complain about the cards I’ve been handed. My hope is that sharing this experience will help bring about a better understanding of those of us who live with more than one disability. As we age, we may all find ourselves with additional acquired disabilities we weren’t expecting – arthritis, hearing loss, cognitive impairment, just to name a few. As my old scouting leader might have said, “it never hurts to be prepared!”

The journey to obtain the correct diagnosis of my condition has been long, and often frustrating. It has only been in the last six months that I’ve had a definitive answer. We all know the question, on every application form, every medical request from a health care professional. “Cause of blindness?” and in my case, “cause of weak bones?” Being quite different forms of disability, nobody ever suspected that they might be linked, so when my very astute GP asked whether I knew anybody else with a similar combination of disabilities, it was a red letter day.

When I finally got my answer, Osteoporosis-pseudoglioma syndrome, it felt a bit like winning the lotto. “Congratulations! You’re one in two million! You win this rare and precious genetic condition. Symptoms may include congenital blindness, and juvenile onset Osteoporosis.” Since the journey was so arduous, perhaps I should carry the letters of my new label after my name.  “Steven Lyle Richardson, OPPG!”

I grew up in Brisbane, in what would be considered a mainstream family. While my parents allowed for my disabilities, they were also determined that my life would be as rich and rewarding as that of my other siblings, neither of whom have a disability. I was punished for not doing my household chores and was as involved in just as much sibling rivalry as any other child in a similar situation. My Dad is an adventurous person, so this included a year living in Canada and six months in the US, where he taught high school industrial education. Some people at the time thought this was quite outrageous, and actually asked, “are you taking Steven?”

Mum and Dad struggled for the same answers I sought in adulthood, against a baffled medical system, against an inadequate education system, and against community attitudes that didn’t accept square pegs in round holes. Despite the best of intentions, it wasn’t long before I got the feeling that I didn’t quite fit in. Even among my blind peers, there was a difference. I had to be a little more careful, couldn’t fully participate in the rough and tumble of the sports ground or lunchtime antics for fear of a broken limb.

Things escalated during my teenage years, when the bone fractures became more frequent and severe. I was no academic genius, so my struggle to keep up with the demands of high school only intensified when I began experiencing more difficulty walking, with constant reprimands for being late to class. The final straw was a fall caused by a stress fracture while being pulled along, by a teacher, faster than I could manage. After that, I went into a wheelchair. I spent two consecutive birthdays and Easters in hospital, and at one time, had all four limbs broken within a six-week period. I felt like a real hamburger with the lot.

While the school had a special needs unit catering for blind and vision impaired students, it was completely the wrong design for wheelchairs, with steps and stairs everywhere. I couldn’t get to classes I wanted to attend because they were halfway up a building, which meant no home economics, and no music. Even extracurricular activities like Braille Music Camp, which so many of my friends raved about, were not possible because of an inaccessible environment.

At one period of time, I sat in the special needs unit all day, because there was nobody to assist me to and from classes. Nobody wanted responsibility for fear of litigation, and trying to navigate around the school myself had already led to another disastrous fall from the chair. All of this had a major impact on my socialization and well-being. I felt like a nuisance, and very much in the way.

There were lighter moments. My friends tended to congregate around me, which made me feel a bit like a king on a throne. One of them was a bit of a lark, and would let air out of the tyres of the chair, just a little each day, so that it was only at the end of the week I would realize just how flat they were.

Thankfully, I haven’t had further occurrences as severe as those of my teenage years. Apart from two femoral fractures, and a broken collar bone, I’ve come off fairly lightly. I do get aches and pains, which can sometimes be small fractures, and my knee also has Osteoarthritis. Consequently, my walking pace is usually a lot slower than average, making walking from A to B a longer process. However, walking more slowly and cautiously is beneficial, as it prevents upcoming unseen hazards, lowering potential risk of falls and fractures. Safe travel is always an innate concern.

Throughout my adult life, I continued to baffle doctors, whose only advice was that my bones are like eggshells, and that I really need to avoid falls. I first heard the name Osteoporosis-pseudoglioma from a genetics expert about ten years ago. My clever GP had the right idea. Some testing was started, but unfortunately the funding ran out, and it was discontinued. Last year, I had a serious fracture while training with a guide dog. While talking over my plight with a friend, we discussed another friend of his who had similar circumstances to mine, and he casually mentioned the name OPPG.

Coincidentally, my hospital specialists were in the process of changing my medication, and started a whole series of tests. I took that opportunity, and got them to include genetic testing for OPPG. It took a further six months, but I finally got the much sought after phone call. I could now mark my medical forms with pride!

Despite the adversity, I generally enjoy life. I work part time, serve on a number of boards and committees, including BCA, live independently, enjoy singing in a choir and jamming with muso mates. I love playing blind table tennis, and all too infrequent visits to the beach. I also like to spend time with family and friends, some of whom tell me I have a keen sense of humour. I own one house, and I’m in the process of buying another. I feel blessed to be in the position I am.

Having a second disability gives me a unique perspective on life. It’s given me the chance to be more empathetic toward those who feel unfairly judged, or even more marginalized in an already marginal community.  I’ve learned not to take the simple pleasures in life for granted, and my experiences give me courage and strength.

My situation has also taught me that it’s our differences that make us unique, and that it’s perfectly OK to be the person I want to be. I may never climb Mt Everest, or jump from a plane, but I will embrace life to the best of my ability. Steven Lyle Richardson, OPPG, will survive.

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