As kids we all remember climbing trees and falling out of them, feeling the cool wet grass beneath our bare feet or taking turns spotting for a classmate while it was their turn on the trampoline. We now live in a world of businesses towing a tight rope for fear of being held responsible ‘if something happens’ to a customer. Public services and organisations adhere to stringent guidelines for fear of liability or litigation.
This piece mirrors a forthright 2005 article entitled ‘Whose Risk Is It Anyway’, published by The Guardian in conjunction with the Disability Rights Commission, as they were known at the time. Nine years on, nothing has changed. The following example illustrates how the lives of families and individuals with support needs are often governed by the organisations providing support.
A large organisation supports my son, who is hearing impaired and partially sighted, as his needs are changing with maturation. When I recently sought to organise support to go on a much-needed family holiday, the reaction was one of heightened paranoia – based not only on past incidents, but inaccurate, exaggerated and damning statements by support workers. Emailed comments directly undermined my character and integrity, and were coupled with statements of: ‘Agree to this checklist of precautions or no support’. There were instructions for our assistant to be on ‘heightened alert’, presuming he and I were incapable of using common sense when it came to my son, creating a mindset of anxiety and imagined disasters around every corner.
As a conscientious, responsible, dedicated mother of seventeen challenging years, raising my son single-handedly, I deeply resent being treated like as inexperienced and reckless, seemingly due to my severe visual impairment and independent thinking.
I’m not saying there haven’t been any incidents when taking my son on holiday in the past, but the kneejerk reaction of the manager not only contradicted a supposed effort to promote greater autonomy in balance with individual support needs – it highlighted a much bigger picture, an all-prevailing excuse of, ‘I’m responsible and have a duty-of-care’.
In the above mentioned article, it was touched upon how the development of children and young people with special needs is often stifled, because they are not allowed enough freedom to take calculated risks or make mistakes. The legally-binding absolutism of ‘health and safety’ or ‘duty of care’ is so ideologically entrenched that it provides the perfect smokescreen for curtailing people’s freedoms. It galvanises further discrimination, from bouncers not letting a visually-impaired person into a crowded nightclub to employers citing health and safety to prevent employment opportunities. These interpretations of health and safety reinforce the notion that people with additional needs are fragile and inherently vulnerable.
My son, assistant and I enjoyed two short days in Whitby, trouble free. But these scenarios happen all the time. People with less of a questioning nature are routinely controlled, forced to live in a padded cell world, while support organisations scramble to cover their backs.
Many support providers are realising people’s need for greater autonomy, but this depends on individual managers and organisations. Yes, support providers have duties and responsibilities, but this should never increase the power dynamic of managers. Clients such as my son and I pay an agency every month out of an allocated budget, so the ultimate control should lie squarely with them.