By Asia Schmok
What’s somebody’s mobility worth? What’s somebody’s independence worth? – Jason Cole
Rand Surbey at the 2016 CPABC Gala
Living with cerebral palsy
For Rand Surbey life hasn’t been easy, and there have been challenges from day one. The 41-year-old Vancouver resident lives with a severe form of cerebral palsy; he is non-verbal and uses a powered wheelchair, both of which present a multitude of obstacles.
“For the amount of things he has to deal with on a day to day basis, he smiles more than anyone else I know,” says Jason Cole, a close friend. He and Rand have been friends for six years and participate in runs as a duo to raise awareness about cerebral palsy. They recently broke the Guinness World Record for fastest wheelchair duo to complete a half-marathon, at the Scotiabank Charity Challenge on June 26, 2016. During their years of friendship, Jason has had a closer look into the struggles of a life with a severe disability. Despite his record-breaking accomplishments, Rand still faces challenges with issues that others would take for granted: staying mobile and having his voice be heard.
Rand Surbey and Jason Cole breaking the Guinness World Record as the fastest wheelchair duo to complete a half-marathon at the Scotiabank Charity Challenge, June 26, 2016
Deprived of his mobility
One of the major obstacles Rand faces is getting the proper support to serve his power wheelchair. He has spastic quadriplegia which affects all four limbs and renders him unable to operate a manual wheelchair. His subsidized power-chair is only under warranty for a couple of years, and can only be replaced after five years. Between the time that the warranty has ended and the time that the chair can be replaced, repairs are covered but while it is out of commission he is not given a “loaner” chair. This creates a challenge, because he is only allowed to earn up to $200 a month on top of his Persons With Disabilities assistance, and the extraordinary cost of renting a power wheelchair is $550 a month. Jason and Rand feel this is just the tip of the bureaucratic iceberg.
Another issue for Rand is the wait time for repairs for his wheelchair, which can be six weeks or more for even a simple job. Jason feels the system has been overloaded with requests for repairs and is highly inefficient. “They have to wait for funding approval, so something as simple as the controller that operates his chair, if that breaks down it goes through multiple, multiple layers of bureaucratic nightmare,” he says. “It’s like swimming in molasses trying to get anything done.”
Jason puts things into perspective by saying, “If any one of us was to go in with a car that was broken down or your cellphone or computer, who would accept six weeks wait time with no loaner and with no nothing to take its place?” Cars and cellphones are also luxuries in our lives, compared to necessities like a power-chair.
Jason knows of many other people in similar situations. He believes the social safety net is lacking and that it is hard for different resources to reach people in need. “We have to fight kicking and screaming to get something as simple and basic as a grown man’s mobility,” he says.
Ignored, invisible, and muted
Jason believes Rand’s biggest hardship is that he is invisible because he cannot speak up for himself. He has a soundboard to communicate, but if the person he is talking to is not compassionate or patient he is often ignored. This causes many of his needs and problems to be overlooked. “He doesn’t have a mean bone in his body, or an aggressive bone in his body. He doesn’t really get heard,” says Jason. “They just wheel him off in front of the TV and that’s where I find him and that’s not right.”
Rand lives in a group home, and previously when his chair was taken in for repairs he was officially told by the government that he was not permitted to leave his house because it was unsafe. Yet they would not make his chair safe to operate, instead locking up a grown man. This further debilitates his independence and autonomy as an adult with many achievements, talents, and triumphs.
Jason has supported Rand as a friend throughout his trials, but he says that it can often be difficult because institutions do not recognize people who are not family. “What I have found in my six year adventure with Rand is that if you’re not related by blood to somebody with disabilities you are not often taken seriously and there are not a lot of resources for us,” he says. ”They will kick me out [of hospitals] when they realize we’re not related,” Talking about his relationship and struggles with Jason, Rand adds, “I think that it is so sad. I have a friend that is caring and people will not take the time to listen.”
Looking into the future
The friends believe that a lot has to be done to improve the situation for disabled people, and not just by increasing the quantity of their lives, but also the quality. The bureaucratic system needs to be made more efficient, both in terms of paperwork (which includes processing requests such as wheelchair repairs), as well as the technical side (they currently need all parts of the chairs individually shipped in from around the world).
Jason says that organizations such as the Cerebral Palsy Association of BC are doing a great job with the resources that they have. Rand has often attended our social events, and he and Jason have participated in and fundraised for the Scotiabank Charity Challenges on behalf of CPABC. In recognition of the issues people with cerebral palsy have with communication and mobility, the CPABC offers an Equipment Assistive Devices program offering financial aid on a first come first serve basis. However, these systems and organizations are underfunded in general, and make it difficult to help all of those in need.
There should be others within the bureaucratic system who act as a go-between for people to voice their concerns and needs, according to Jason. There is no point in having different resources if they cannot reach the people in need of them. On top of that, the system is often confusing and there is a lack of easily accessible information. For the disabled population to be more integrated into society, pigeon-holing them in the system is not the answer.
For Rand, his power wheelchair is his legs, and yet he has been waiting for six plus weeks for repairs. Jason asks, “What’s somebody’s mobility worth? What’s somebody’s independence worth?”
Learn more about our Equipment Assistive Devices Fund