Frank Sinatra definitely had it right, every person has their way and for those of us with disabilities this rings true in every aspect of our lives.
Pictured: Me on my horse of a lifetime (Sam) using adaptive equipment to try and contain a half ton beast with a heart of solid gold.
I remember being a conference for my disability (Arthrogryposis) and watching a video of a baby girl whose arms, much like mine, were fixed straight. The video was at a clinic where they were trying to encourage the child to stretch her arms upward in order to reach food (I think it was banana slices). The clinician was trying to get the girls to be tactile, as finger foods are proven to be an important developmental tool for young children to explore textures and understand food to mouth protocol. But, despite their attempts to encourage otherwise, the girl continued to lower her mouth to the food instead, finding her own more efficient way of getting what she wanted.
In this I found an important lesson, I’m not going to tell you that ‘where there’s a will there’s a way’ because I don’t believe that to be true. I have the will to brush my own hair in the morning, but I have neither the dexterity nor the range of movement to accomplish this task with any meaningful results. However, as human beings we learn through experience, through play, we learn to walk by falling down, we learn what we like by experiencing things we don’t. Often the most powerful motivator in a person’s life is want, we’ll work hard for the things we need but we’ll go one further for something we want.
This is why play is the key. If a child wants to ride a bike, they’ll find a way, I used a modified bike whilst at primary school, I didn’t have the flexion in my knees to pedal so instead my stepfather removed the pedals and I pushed with my feet, imagine a giant balance bike. I even twisted the handlebars the wrong way so that I could reach them. I didn’t care that this wasn’t the standard because I enjoyed the activity, I had a bike I could tie up in my school shed like my friends. My bike was not recommended to me by a consultant or physiotherapist, it was created in my own mind and brought to life through experimentation.
To this day I have been offered adaptive cutlery myself, special curved spoons and forks and a whole assortment of knives. Instead of using adaptations sometimes it’s better to adapt yourself, who needs a knife when teeth are just as effective? I know this sounds extreme but sometimes there isn’t an easy way of doing something, overcoming disability takes time, patience and play. This often can’t be achieved in a doctor’s office or during a visit from your OT. The problem comes when there’s a conflict between the protective instincts of the parent and the child’s need for exploration. No one wants to see their child hurt or upset but it’s often the failure of a task that fuels the determination to get it right. For someone with a disability this may take substantially longer, years even, but the will to keep trying is indicative that the task is possible. As a general rule impossible tasks do not motivate half as well as those tantalisingly within reach.
What I’m trying to say that it is important that you are allowed to develop your own way and have ownership over it. Doing things differently is not strange or weird, it’s what keeps you ticking, what makes you, you. Learning the enjoy the process of experimentation, of trying and of playing is often the key to unlocking your potential. There are always going to be frustrations and, more often and not, things that you simply can’t do, but this isn’t just the case for you. There are lot’s of perfectly abled bodied people that can’t do things to, if everyone was capable of everything then the world would be rather boring. Embracing your abilities and pushing those boundaries is the key to being happy and healthy. I must admit though, the running on my Running Frame is far more comfortable and efficient than my balance bike. In some instances the right equipment can push you further than you ever thought possible.
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