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Have you ever designed a seemingly innocent questionnaire for your customers and received some rather hostile responses? Have you ever asked an innocent question and received a gasp of horror in response?
Parents, carers, families and advocates of people with a disability typically operate with a base-line level of stress and anxiety far above that of everyday people. In addition to the normal stresses that most people experience with everyday life, these people have a further layer associated with everything to do with their child, sibling, partner, cousin or friend and their day-to-day challenges. This scenario manifests itself in the form of interactions that at times can be very difficult for all involved. Often they are created from the best of intentions but due to poorly worded statements or questions they rapidly escalate into a situation that is best to be avoided. And it can be, most of the time.
A recent experience highlights my point and also my thinking and it may help you with your interactions in future...
As the father of a 15 year old boy with cerebral palsy I have had to deal with many challenges over the years. Not even 1% compared with those my son has faced and continues to face, but still they continue to present themselves in sometimes the most unexpected places and ways. I concede that many are not intentionally created, however, equally, they can also be avoided by a little more consideration. I will explain.
Recently with the start of the new school year and with my son transitioning from middle school (years 7,8 and 9) to senior school I faced one of those challenges. This time it was more a challenge to my internal will to continue to educate broader society on the finer points of how to interact with the parents and carers of a person with a disability. The events went something like this.
Firstly, and in a forward planning way which is a good thing, the school approached me regarding a planned trip for the year 10 cohort to a very important day of reflection for the boys to focus on their self-esteem and to reflect on their educational journey to date and what challenges senior school is going to present. In their initial email (I will get to the content of that shortly) they attached a letter outlining whom the speakers will be etc etc and in closing made a very firm statement along the lines of “All boys are expected to travel to and from the event on buses that the college will arrange”. Sounds fine right? What could possibly be the problem with that? Well in the attached email the main discussion was surrounding if I could drop my son off at the venue and then pick him up in the afternoon? In the initial defence of the school they would have been initially patting themselves on the back for thinking about my sons transport requirements many weeks before the event. And it is a good thing they were thinking about it – I do appreciate that. However, as I am sure you have already identified, their proposed solution could not have been more discriminatory if they tried. With an unwanted sinking feeling I reached for the phone to commence an education lecture, again.
Fast forward to a week later, second week of school, things seem to be getting into routine and all things considered everything is good.
Then another email arrives from the school. In Queensland when a verified PWD attends a mainstream school there is a process called a IEP that is undertaken twice a year. A IEP is an inclusive education plan. It is a process of discussion and negotiation between the school and the parents which is then documented and promptly forgotten about in any practical sense. This email outlines that the IEP process is about to begin and to kick it off could we complete a planning questionnaire to set the scene about what our (note that email wasn’t sent to my Son) goals were for our son for the year. Being generally a positive person I again think this is good, they are onto this and given our chat last week I opened the attachment with genuine interest and eagerness to set some goals.
Question 1 “Realistic hopes and dreams for my son at school this year”
Jaw.
Hits.
Table.
I am not sure how to react. My mind instantly pictures the classic Monty Python skit where for no apparent reason a man is repeatedly slapped in the face by a wet fish – that is how I felt.
Realistic Dreams? I thought dreams were a collage of surreal worlds and amazing experiences that blur the line between reality and an imaginary fantasy world. Isn’t that what a dream is? I thought a realistic dream, for many, is more like a nightmare?
Realistic goals? Does the school ask all the other students “hey mate, what are your goals this year, but please, make them realistic, none of this stretching yourself stuff”.
I close the email. I smoke too many cigarettes; I pace around a bit.
I then gather the composure to respond.
“My hopes for my son this year are exactly the same as those for every other boy in the school so I assume they are realistic. I hope he receives outstanding opportunities to learn and is supported and encouraged to reach his full potential. I hope he makes friends that are lifelong. I hope that his wheelchair does not define who he is. In terms of realistic dreams – there are none. My dreams for my son would be seen as anything but realistic to the main stream world yet despite this, he has achieved so much and continues to achieve far beyond anyone’s expectations – including mine at times. He can swim on his own and is training for the Paralympic games – I dream of him getting there. He can snow ski on his own – this was a dream of his and we helped it come true. He has been diving with shark’s on the great barrier reef, sky diving, surfing – the list goes on. None of this would have happened if we didn’t have a dream to do it or if we listened to all those who said it wasn’t realistic. So in terms of my dreams for my son at school this year I think you have an idea of what they are now.
If you are interacting with people take your time to understand the language you need to make sure that you are not designing to discriminate before you even begin and you may find your interactions contain less stress and more focus on the matter at hand.
In this particular example the question could have been modified to read:
“What are your hopes and dreams for your son at school this year?”
Simply by dropping the word “realistic” the question becomes inert and should not trigger a reaction before the parent has had a chance to consider a response.
