Independence; freedom from outside control or support, the state of being independent. I’m four years having mobility problems, and only now, because I’m affected, realize the value independence has in our lives. In my opinion, the system fails so many people to be independent by not helping them to help themselves. The term “independent living” is thrown around so frivolously by those in control of the system. But being independent should not mean having personal assistant’s or chaperones to wash your dishes or to push you from place to place, to access buildings, navigate shopping centres or stay with you in the shower. This mentality creates little expectation that a person with a disability will live independently or establish a household of their own. It should mean providing accessible homes, correctly-fitting wheel chairs and essential everyday equipment
It is amazing the difference independent mobility can make to someone, giving them the ability to do what they want, and go where they need. Wheelchairs are not luxuries – they are essential for disabled people to move safely both in and out of the house, get to work and education, and to live their lives as independently as possible. The right wheelchair can help someone to stay healthy and well, while the wrong wheelchair can result in unnecessary discomfort and pain whilst creating isolation and suffering. My first wheel chair was almost three inches in seat width too wide leaving me in constant discomfort and providing my body with little structural support. I waited for almost a year for funding from the government to get a new, adequate chair which never came resulting in my family, friends and neighbours fundraising to buy one for 6,000euro for me. I was assessed by the HSE as “not in need” of a wheelchair as I was sitting in one at the time; it didn’t matter that it was uncomfortable causing me chronic neck strain or not remotely functionally just if I was sitting down or not. Their decisions are based on assessments of individuals clinical needs and goals with non-transparencies as to who qualifies. At the end of the day how can you rate one person’s pain more important than another’s.
The cost of not getting the right wheelchair is significant. It could keep a young person out of school or someone out of work. A pressure sore (from an ill-fitting wheelchair) costs tens of thousands to fix. It is especially important for children to get the wheelchair they need, particularly as they grow and their needs change. Families shouldn’t have to resort to charities or fundraising for such a basic right. The situation leaves thousands of families with five-figure bills for expensive but essential equipment. The threshold for deciding someone needs a chair varies from place to place. Many people also face huge delays in getting urgent equipment; when with the right equipment, promptly provided, you can be a normal, contributing member of society.
The right equipment is the difference between being independent or dependent. Every morning, for one and a half years, I was sitting in an immobile shower chair due to health and safety policies imposed by the HSE which deemed me using a self-propelling shower chair as unsafe despite pushing a manual wheelchair every-day. I had to wait a further six months to be assessed until I was deemed eligible for a self-governing, self-propelling shower chair. I spent €6,500 on a specialized battery pack which allows me more independence. The battery pack allows me to get out of the house on my own or down town.
I suggest instead of paying for extra career hours or waiting to fix pressure sores or neck strain the government should start at the route of the problem and provide the right wheelchair and essential equipment to enable disabled people to get out and about, go to work, and live independent lives. Regular review clinics and assessments should be provided to people using the equipment and help them advance as their needs change and not keeping many disabled people forever in the status of dependent child. We’ve made great strides in this country over disability awareness, now we need more education in what it is like to not be able to do something unless someone else helps you.