Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
When deciding what education option is best for
one’s child there are a multitude of factors that are considered. Dale Dileo’s book Raymond’s Room "Ending the Segregation of People with Disabilities" has significantly shaped my thinking about what might be in
Matt’s best interest. Dileo has worked in the disability arena, in many roles, for
many years and strongly motivates for inclusion not only in schools but also in
the workplace. He covers many topics but it is the psychological perspectives
and studies on difference that struck a chord with me.
It all starts with longing that we have for our children to
belong. I believe one day too, Matt himself will have that longing to belong. In order to
belong we need people’s appreciation and
acceptance of who we are. To work towards that acceptance we have to understand
a bit more about what causes people to reject some people and not others. The
concept of deviance is key to making sense of this.
“People are viewed as deviant when they are perceived as
significantly different from what is usually experienced. This is part of human
nature. When we are faced with someone who is unusual in a way we do not
particularly value, we are curious, but also mistrustful. This is not limited
to disability.” (page 32)
So being seen as different from the norm can lead to people
keeping us at an arm’s length, and thus not helpful for belonging. But it seems
that being different is not fixed in stone nor is it an objective reality.
Deviance can be exaggerated or minimised in the perceptions of people.
“The interesting thing about the perception of deviancy is
that “differentness” can be subject to exaggeration. One way to highlight
differentness is to group people who share the difference together. What tends
to occur is that the shared difference becomes more prominent because it is
more noticeable.” (page 33)
Dileo explores how by clumping all the “special needs” kids
together we are doing them a disservice in terms of other people’s psychological
view of them. When grouped together, all that other people see are the things
that these kids have in common – that is their disabilities or special needs.
It therefore becomes more noticed and more prominent.
“Grouping people of like disability only magnifies what they
share in common – the disability.”(page 49)
He also shares how differentness can be minimised, or at
least seen as only one characteristic of the person, not as the defining feature.
“People often generate opinions about others based on initial
impressions, and then modify those impressions as they encounter new
information. When a person has a single noticeable difference, such as a
disability, that characteristic can be moderated by other characteristics, such
as personality traits, style of dress, and job title.”(page 48)
Further studies show that people are more willing to
tolerate deviance or differentness the more competency the individual
demonstrates. He gives an example to explain this:
“Imagine you are meeting, for the first time, a woman in a
wheelchair whose speech is a bit slurred. Some people will make assumptions
about her intelligence, status, etc. based on the wheelchair and her speech.
But now imagine that the individual in the wheelchair is introduced to you as
the head of a local company, and that she is wearing a nicely tailored business
outfit. The centrality of her disability immediately fades, in the light of her
status and appearance”(page 48)
In Matt’s current school setting the other kids are
certainly aware of the ‘differentnesses’ about Matt, but they also know that he
loves drumming, he is good at kicking a ball, he is fun to play chase-chase
with and he delights in telling everyone what pictures are on their t-shirts.
So for many of them he is pretty cool. It’s because they have had the
opportunity to get to know Matt as an individual. Things would have been very
different if those same kids had encountered Matt as part of a crowd of other
kids all with special needs. Dileo explains using the above mentioned story
“if you are meeting
for the first time a group of eight individuals in wheelchairs, there is no
opportunity to process information competing with the disability. Instead, the fact that all of
these individuals have a common difference, a wheelchair, is pretty much all you
will perceive. In other words, you don’t see a group of individuals, all of
whom happen to use wheelchairs. You tend to see a group of wheelchairs, all of
which happen to have people in them.”(page 48)
Dileo's thoughts and writings have connected deeply with my passion of Matt being given the opportunity for
other people and children to get to know him for all that he is, not just defined by one aspect
of who he is. And so including him in a mainstream setting, as long as he is
happy, learning and belonging, is key to pursuing this goal.
"Grouping people who share a difference (a disability)
exaggerates the perception of difference. It limits who will be friends,
neighbours, schoolmates, and work colleagues. Lives become defined , not by
interests, family, goals and social relationship, but by disability-related
goals often imposed from a program."(page 49)
Every Friday afternoon Matt goes to Soccercise Starz which is an extra mural activity at his school. He loves it. Fridays used to be noticeable because it was the day they served hot dogs at school. Matt would say HOTDOG DAY. But that favourite treat has been eclipsed and now Fridays are known as SOCCER DAY. The soccer practice takes place just behind the school parking lot so I can sneak a peak at Matt in action. I love watching how he is assisted to fully participate. And afterwards his eyes sparkle with delight.
In the next few blogs post I hope to explore more helpful perspectives from Dileo's book. Watch this space.
---- A big thank you to Cindy's mom who blogs here for recommending this book.
'delayed' is a word that helps neither me nor my daughter at all, nor any professionals that serve her. To think of development, milestones, victories - only in vertical linear patterns keeps us in a "catch up" mindset. I don't believe Addie is delayed. I think she's just different. Even when she could walk, it wasn't that she caught up to other kids - she still does it differently. She is unable to speak verbally, but that is not a matter of being behind, we are not awaiting speech. She communicates effectively through a variety of other means. And our goal is not that she do things like everyone else. It's that she does things in a way that helps her understand, appreciate and wield the power inside her effectively - no matter if it looks nothing like those around her.
a quote from Terri who blogs here, and whose comments on our RTS Email Support Group always inspire me to pursue a future for Matt that has concepts like belonging, participation, contributing meaningfully and other ideas that push towards Matt being appreciated as a valuable person in society.