The experience of discrimination and disablism: As a parent does it happen to you?

I recently read a research article that  offered up some interesting food for thought for me as the parent of a child with autism. It got me thinking once again about the numerous ways that parents are subjected to an insidious, though often not spoken about, form of ‘disablism’ – a particular form of discrimination derived exclusively from negative reactions towards those who are differently abled.

It also got me  questioning  just why it is that parents of children with autism are routinely seen as being somehow immune to the experience of disablism.

In their work ‘Repositioning mothers: mothers, disabled children and disability studies’ Sara Ryan & Katherine Runswick-Cole (2008:201) argue that the continued representation  of  parents as  ‘oppressors’  who perpetuate disablism upon their children, by theorists applying the social model of disability,  has effectively placed parents outside of the disability movement.

They suggest this is due to the division between the impaired and the non-impaired that the social model of disability creates (Ryan & Runswick-Cole, 2008:199). Under such a division, parents of disabled children are considered non-impaired and therefore positioned as being a causal factor in the discrimination and disablsim their children with impairments face (Ryan & Runswick-Cole, 2008:199).

Ryan & Runswick- Cole (2008:201) argue that in doing so, the social model of disability underestimates  parental understandings of disability  in a manner that takes little to no account of the  broader ways acts of disablism are both perpetuated upon and experienced by parents of disabled (differently abled)  children themselves.

Do you think that you as a parent have experienced discrimination/disablism?

If so what form has it taken?

 

 

 

Autism : Extreme Love – Louis Theroux’s Documentary

This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.

It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.

Theroux does more than just talk  to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.

In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.

It is by far the most balanced and revealing documentary on the Autism experience  I’ve seen in a very long time.

I thoroughly recommend it and would love to hear your thoughts on this or any other  documentaries, movies or books you would recommend?

The Illusion of Inclusion : Bad dream or lived experience?

“Inclusion is tolerated to a degree because … it’s part of our policy. It’s part of our law.

So it’s tolerated to a point. Acceptance, I’m not so sure…. acceptance is a completely

different thing… you have to live it and feel it  to know the depth of the emotions

involved”  (Father of two teenagers with cognitive disabilities).

The arena of educational inclusion poses a significantly  growing challenge to policy  makers and parents alike  in which the need  for the development of an education policy that effectively facilitates  the educational and social inclusion of disabled children and their parents’ within the processes of inclusion is required.  Rises in the level of students within Australian schools diagnosed as having a cognitive disability, dysfunction or delay  (Australian Institute of Health and Welfare, 2008:8) make this category of disability an increasingly significant area of concern within both the framework of contemporary educational policies and parental experiences of educational inclusion. In focusing specifically on the ways in which parents of  children with a diagnosed  intellectual delay or  cognitive dysfunction (Autism, ADHD, ADD PDD-NOS, Global Delay)  experience educational inclusion, this paper speaks to an increasingly important area within educational policy formation and implementation.

This investigation approaches the educational inclusion of children with cognitive disabilities as an important and challenging issue which holds the potential to impact on both the human rights of children with cognitive disabilities and their parents alike.  It therefore recognises the multiple structural restraints through which parents must navigate their child’s process of inclusion within schools.  As such it supports calls for parents to be given “  an ongoing voice in the development of the policies and strategies that affect their lives” (Shut Out: The Experience of People with Disabilities and their Families in Australia, 2009:vi).

Educational inclusion within Australia is now being enacted within an anti-discrimination policy framework which promotes the incorporation of inclusive education as a standardised form of educational practice for children with cognitive impairments (Better Pathways, 2006:3). It is within this anti-discrimination policy based frame work that  parents of children with cognitive disabilities are required  to access and provide formal medical confirmation of their child’s disability and allow additional IQ testing of their children in order for schools to request funding and aids. Within this framework parents are also designated the role of having to negotiate with staff and schools to implement strategies that ensure their child’s needs are met in ways that parents of non-disabled children are not required to do.  Yet despite the integral role that parents of children with disabilities play in facilitating their child’s educational inclusion, the impacts, experiences and understandings of inclusion, including  the processes and practices through which it is implemented, have rarely been studied from a parental perspective.

This paper upholds parental perspectives through  investigating the ways in which broader understandings  of the policy of social inclusion shape and inform their  expectations of the inclusion process and how in turn the processes and practices of inclusion are experienced in relation to such policy ideals.  This appraoch enables parents,  within a research format , to inform policy and academic discussions as to whether or not  the practices of inclusion reflect the broader ideals outlined within  inclusive educational policies and practices (Runswick-Cole, 2008:176).  Such an approach empowers parental voices by removing  control of the topic of educational inclusion from the confines of   academic and educational professionals .

In so doing this investigation found  that there are significant disparities  being experienced between the policy based ideal of inclusion as a pathway toward equality and the  lived  parental experiences of their children’s negation and exclusion within the inclusion process . For many parents within this study inclusion is seen to operate via a process of exclusion due to the multiple processes  and measures their children are required to undergo  in order to achieve funding. Through the use of  additional measures such as IQ testing  a child with a recognised disability may be ruled ineligible for support and therefore be  excluded from the inclusion process. Such processes create the arena in which parents express having to continually  fight for their child’s support needs to be acknowledged and met.  For these parents the ideals of inclusion have become an illusion.

“People think that because my son has Asperger’s but goes to a mainstream school that he must be ok and that things must be getting better. You know…. That kids with disabilities are being accepted….That inclusion is working. But what they don’t see is that my son is struggling. He gets no support from the school because he doesn’t qualify even though the doctor said that he has Asperger’s. He spends his  time at school alone in the library. The other kids don’t accept him. This frustrates me because I can see that he really does need the help but I can’t get the school to see that. I feel like I’m always on the phone asking for support for him but never getting anywhere. It’s like this constant bad dream that I can’t  wake up from and I can’t get anyone at the school to pay attention to me. ”

This investigation concludes  that despite the broader policy of equality upon which educational inclusion is founded,  the successful  inclusion  of  children with cognitive disabilities within schools is still being hampered by the lack of regard, understanding, professionalism and support  that parents describe experiencing and the  overall unwillingness of schools to individually tailor learning packages for those with cognitive differences.  Parental experiences of educational inclusion therefore indicate the need to further examine, expose  and replace the structural and systemic restraints currently being implemented within the Australian education system.