Q&A with Jordan for Erb’s Palsy Awareness Week 2019
For Erb's Palsy Awareness Week 2019, we have interviewed Jordan Barnsdall, a young man living with Erb's Palsy.
Can you tell us a bit about yourself?
I am Jordan Barnsdall, 21 years old, I live and work in Sheffield. I had a difficult birth as I was a big baby – 9lb 12oz and suffered a shoulder dystocia at birth severing 3 nerves serving my right arm, as well as a greenstick fracture of my right arm. I had nerve grafts in June 1998 in a 4-hour operation, then physio for many years afterwards. I had a further operation in September 2010 to release a tendon in my right arm as I could not flex it fully.
What difficulties have you encountered living with Erb’s Palsy and how have you overcome these?
Living with Erb’s Palsy has been quite difficult at certain parts in my life. During school, it was difficult to make friends who will accept people who are different, it was also difficult to join in activities which would require strength from my arm. There was a lot of bullying during my school years. This slowly stopped towards the end of secondary school/college.
From an early age, I had problems cutting food, especially meat, I also write with my left hand, but I am naturally right-handed, so my writing isn’t brilliant, and I write slowly, so I had to have extra time in exams.
I could never do up buttons on shirts or sweatshirts, I had a phobia about buttons when I was a small child, I struggled with laces on shoes and trainers therefore having Velcro shoes. Suit jackets never hung correctly on my shoulders, but I have found a tailor who can adjust them.
What advice would you give to young people growing up with Erb’s Palsy?
Young people should be given every opportunity to try all sports and activities, not to be held back by their disability, try everything once!
What advice would you give to parents of children with Erb’s Palsy?
I believe parents should not wrap their child in cotton wool as this will make them feel insecure. My parents were very supportive; they never said I could not do something because of my disability. They let me try everything from an early age, I rode a bike without stabilisers from 5, swam from 6, went caving with my dad from 9 until I was about 14. They encouraged me to cook, to partake in Duke of Edinburgh Award scheme (Bronze and Silver), I went on an Under 17 driving course when I was 15, passed my driving test at 17.
My father has shown me how to paint and decorate, and I have decorated my lounge – even though it took a little longer than someone more able to do it.
Let your child find their own limitations, let them ask for help first, rather than doing it for them.
What adaptations if any have been made for you in the workplace?
In my workplace, I do not have a physical job most of the time. But when it comes to any heavy lifting I have support from my co-workers to carry out any jobs I feel uncomfortable with. My company are very supportive of me.
You recently purchased a new car, can you tell us about the features you looked for when purchasing a car and how these help you?
Looking for a new car was very interesting to me. Most cars today come with a lot of automatic features. Some of the features I looked for were the following:
- Automatic transmission – To reduce pain in the arm on long journeys
- A flat boot, with no lip to enable me to transfer items in and out more easily – to help with carrying items in and out of the boot with no unnecessary lifting
- Automatic tailgate – to reduce strain in the arm when lifting and lowering the tailgate
- A bucket style seat – to keep the body in a more comfortable position
- Automatic rain sensors & headlights – so you don’t have to lean forward to turn a switch every time it starts raining and when it gets dark/light
- Electric seat adjuster – to find the optimal driving position to help with the disability.
I believe it’s important to get these main features on the car to help with the disability. For myself, these help a lot during day to day driving and tasks. The charity, Regional Driving Assessment Centres, (RDAC) can provide driving and access assessments to make recommendations for adaptations and features for vehicles like the above based upon your specific disability.
What do you wish the general public knew about Erb’s Palsy?
I believe it’s important for this subject to be put out there, so people are aware of what this is. If young people don’t know about this disability and they come across someone living with this, it is, dependant on the severity, a hidden disability, people should make allowances, but also let us get on with finding the limit of our abilities.