The Onus of Acceptance – Written by Jean Winegardner

“I recently got an email pitch from a company with a social skills product that claimed the product, “will enable [children with special needs] to be accepted by their peers throughout all aspects of their lives.”

I’m not actually sure what the product was because that sentence stopped me in my tracks.

“Be accepted.” I can’t stop thinking about that. “…will enable them to be accepted by their peers…”

I don’t even remember what the pitch was for because it made me so upset. Why the passive structure on that sentence? Why is the onus on the disabled to be accepted? Why is it our job to make you accept us?

Shouldn’t the real issue here be how to get the typical children to accept special needs kids?

I look at my beautiful, perfect, weirdo autistic son. He is not like his peers. He is also not always accepted. It would probably be easier in the long run for him to learn to “be accepted.”

Yet I look at him and the most damaging thing I can imagine saying to him is, “Maybe you should act like everyone else so kids like you more.”

Yes, I’ve put my son in social skills groups. Yes, I teach him about neurotypical society. Yes, I teach him how to navigate the world as it stands. But no, I do not teach him that he has to change so that the other kids will accept him. I tell him that I love him exactly the way he is. If kids are mean to him, I tell him that the problem is with them—not him.

I am a perfect example of someone who has adjusted her behavior to be accepted. At this point it is almost unconscious. I don’t know that it has been terribly damaging to do that. But it has been exhausting. And it is unfair.

I hear people making the argument all the time that people have to work to be accepted. I hear parents of typical kids, parents of autistic kids, and neuro-typical and neuro-diverse people alike say that you have to change yourself to fit in. To a degree, they are right. Most people work to get along with other people. We dress a certain way in business environments. We tend to alter our behavior based on the situation in which we find ourselves.

But these ways of fitting in and the fact that everyone does them doesn’t change the fact that society asks autistic kids and adults to change most of their behaviors and to deny their natural instincts for the purpose of becoming more palatable to the neuro-majority. Society isn’t asking autistic people to make the same adjustments as everyone else. Society is asking autistic people to suppress who they are almost all of the time.

Asking someone to change who they are to be accepted isn’t okay. It’s like asking a woman to learn not to be raped. It’s like asking a child to learn not to be abused. It’s like asking a victim to learn not to be bullied. I know those analogies aren’t exactly right, but that is what it feels like. If you want something to happen, you have to teach the actor—not the recipient.

I am happy that I hear more and more parents defending their kids’ rights to be who they are, society be damned, but I know that I also hear a lot of parents telling their kids that it is their job to fit in. I wonder if all parents—of both typical and autistic kids—stopped trying to help their kids fit in and just told them to be who they are—consequences be damned—if maybe those consequences would disappear.

Maybe the time has come to stop teaching our autistic kids to mold themselves into what society wants them to be. Maybe the answer isn’t to change autistic people until we are palatable to the world at large. Maybe we don’t need to keep working to “be accepted.”

Maybe the answer is to put the onus on everyone else to accept us.”

 Article sourced directly from http://autismwomensnetwork.org/node/1634

 

How Important Do You Think Parental Advocacy Is To Your Child’s Education?

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Sara Ryan and Katherine Runswick-Cole, in their 2009 UK study into the ways mothers of autistic children experience advocating for their children, argue that parental experiences of advocacy are being largely ignored within society’s institutions. 

Ryan and Runswick-Cole’s study of 36 mothers of autistic children found that mothers displayed a heightened degree of advocacy for their children.

They further suggest that the level of competency with which mothers advocate for their children, has been created through the necessity of having to “fight for their children’s rights within the education system” (Ryan and Runswick-Cole, 2009:43).

For this reason they draw attention to the fact that for parents of autistic children, education is often a problematic experience which creates the need for parents to advocate on behalf of their children (Ryan & Runswick- Cole, 2009:43). 

Yet despite this, the high level of competency that parents of disabled children demonstrate on behalf of their children has gone vastly unrecognized or ignored, by both researchers and the broader community alike.

As such, this lack of understanding and recognition, as to how parents navigate and experience their roles as advocates within educational inclusion, serves to further negate any true appreciation of the importance of parental advocates.

 As a parent do you feel that being an advocate on behalf of your child is important?

As an advocate are your opinions acknowledged and valued or pushed aside and ignored?

 

Why Are Children with Disabilities Still Being Bullied and Marginalized within Education?

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“Many disabled children fail to reach their full potential because they continue to be marginalized in schools, health and social care, according to new research funded by the Economic and Social Research Council (ESRC).

“We found that disabled children often experience discrimination, exclusion and even violence,” say Professor Dan Goodley and Dr Katherine Runswick-Cole, who implemented the study at the Manchester Metropolitan University. “The biggest barriers they meet are the attitudes of other people and widespread forms of institutional discrimination.”

“Disabled children are seldom allowed to play and act like other children because of concerns about their ‘leaky and unruly’ bodies. But our study shows that many children who don’t fit the narrow definition of ‘normal’ have untapped reserves of potential and high aspirations which can be fulfilled when their families receive effective support. There are also many amazing families who should be celebrated for the way they fight for their children.” continues Professor Goodley.

The aim of the Does Every Child Matter, post Blair? project was to find out what life is like for disabled children and young people in the context of policy changes set in motion by the New Labour Government after 1997. The Aiming High for Disabled Children policy agenda was intended to enable disabled children to be ‘healthy’, ‘stay safe’, ‘enjoy and achieve’, ‘make a positive contribution’ and ‘achieve economic well-being’.

The findings, which are based on a series of interviews with disabled children and their families, reveal numerous barriers to these goals, for example:

  • Disabled children are often perceived by educational and care professionals as “lacking” and as failing to fit in with the image of ‘normal’;
  • Families who do not match the norm are frequently excluded from friendships, education and work;
  • The support system is complicated and there are gaps in provision, particularly during the transition to adulthood;
  • Physical access and transport barriers to sport and leisure activities result in segregation, while participation in art and creative activities is limited;
  • Widespread discriminatory attitudes threaten to create a culture of bullying;
  • Families of children with life-limiting/threatening impairments often experience isolation and poverty

The researchers call for a change of attitude towards disability so that diversity is not only valued, but promoted. “There is an ‘epidemic’ of labelling children as disabled,” Professor Goodley and Dr Runswick-Cole warn. “Parents are repeatedly under pressure to talk about what their children can’t do in order to access services and support, but sometimes the label can obscure the individual. Families should be asked what support their child requires, not what is the ‘matter’ with him or her.”

Their report recommends that policy should prioritize enabling disabled children to break down barriers by supporting their participation in education, the arts, leisure and their communities and by meeting their communication requirements. “We need to re-think the culture of individualism and performance which pushes disabled children out” continue the researchers. “Pressures on schools are getting worse. We found a case where parents of non-disabled children petitioned to exclude a disabled child. What does this say about the meaning of education and community?”

The study found that bullying is often accepted as inevitable when disabled children are perceived as vulnerable. There were several layers of violence, from manhandling in school to psychological bullying, which often goes unnoticed by adults. Some children do however stand up to bullies and refuse to be limited by labels that are imposed upon them.

One young person insisted on attending Brownies meetings alone, despite health and safety rules that required her mother to accompany her. “Kids seem to enjoy challenging people’s expectations about their limitations,” the researchers commented.”

Originally sourced from http://www.esrc.ac.uk/news-and-events/press-releases/18605/disabled-children-do-matter.aspx

 

Parental Experiences of Systemic Violence Within Educational Inclusion

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Educational inclusion is the process of integrating children with disabilities within public or private non-segregated (mainstream) educational facilities (Better Pathways, 2006:3). Cognitive disabilities (Autism, Asperger’s Syndrome, Intellectual or Global Delay, Attention Deficit Hyperactivity Disorder) form the largest and fastest growing area of disability within educational inclusion (Australian Institute of Health and Welfare, 2008:8; AEU, 2011:2).

This research therefore encapsulates parental perspectives on the fastest growing area of inclusion within our education system. In doing so it provides insight into an under investigated and increasingly contentious area of policy that holds social and political ramifications for both children with cognitive disabilities and their parents (Goodley and Runswick-Cole, 2011:604;Goodley, 2001: 207).

Background

Parental experiences of educational inclusion are situated within an anti-discrimination policy framework. A framework which increasingly constructs the ideal of inclusive education as the standard form of educational practice within Australia (Better Pathways, 2006:3).

Within such contexts parents of children with cognitive disabilities are required to submit to multiple educational policies, processes and practices that other parents are not exposed too.

Predominant among these is the application of an Intelligence Quotient (IQ) rating in order to determine their child’s eligibility for accessing special educational facilities and funding (AEU, 2011:2; Education Standards, 2005:10).

This processes makes the allocation of funding for children with cognitive disabilities one of the most structurally controlled categories of disability within the inclusion process.

In Australia the qualifying IQ score for both accessing special educational facilities and government assistance for funding is that of 70 or below (AEU, 2011:2; Commonwealth of Australia, 2009:18).

Through applying qualifying IQ scores the Australian education system has significantly reduced the number of children with cognitive impairments eligible to access special education and funding (AEU, 2011:3).

The Australian Education Union (2011:3) state that as a consequence of the way in which the government applies qualifying IQ levels to both funding and accessing special education, “the rights of students with disabilities to be provided with special education” are being removed. 

The AEU (2011:2) estimate that 94% of children with cognitive disabilities are  not being accurately “recognised or supported” within the Australian education system. 

This impacts predominantly on children with conditions such as Autism Spectrum Disorder (ASD), Asperger’s Syndrome, Global Delay, and ADHD, as they receive little to no funding within the  process of educational inclusion (AEU, 2011:2).   

Through restricting access to special educational facilities, parents of children with cognitive impairments within Australia are being structurally channelled into engaging within an inclusive education which in turn, through its own mechanism, actively denies parents the ability to access the appropriate supports their children require.

Research Findings

Parents within this study used the words, ‘fight’, ‘risk’ and ‘brutalisation’ to describe their experiences of their child’s process of educational inclusion within a system underpinned by the policies of educational equity for children with disabilities.

Such findings suggest that parental experiences of educational inclusion do not begin at the school gate. Rather they begin with the policies and processes that enable the education system to structurally define and dictate the practices of inclusion.

Parents described experiencing educational policies not as neutral legislation but as the discriminatory grounds from which their enforced compliance with the processes of categorising their child’s level of dis/ability begins.  Such expressions suggest that from a parental perspective there is something fundamentally non-inclusive about an education system that tests, measures and defines children with cognitive disabilities in ways that deny them access to support.

This research further found that parents experience their child’s processes of inclusion within the Australian education system as discriminatory, oppressive and exclusionary. It found that parental experiences are constructed through the restrictions that the policy of mandatory education, when combined with educational inclusion, hold for them.  These restrictions are experienced through the lack of special educational facilities available and the eligibility criteria applied to accessing them. Some parents expressed that due to these restrictions educational inclusion is not a choice for them but an enforced action.

Parents related experiencing the capacity of the education system to define, limit and remove their child’s access to resources and funding as  creating both an implicit and  explicit ‘threat’ (Goodley and Runswick-Cole, 2011:604). Parents further expressed that the lack of transparency and accountability the education system applies to the disbursement of funding gives them “no say” regarding how the practices of inclusion are implemented.  This generated a sense of exclusion within parental perspectives due to the authority of the education system and school staff to define and decide how their children’s inclusion will be managed.

This was reflected in the “everyday encounters with disablism” that parents describe experiencing within the education system (Goodley and Runswick-Cole, 2011:609).  These everyday encounters of discrimination, oppression, disablism  and  sense of ‘threat’ that parent’s experience can be identified as systemic violence  (Goodley and Runswick-Cole, 2011:609). This is reflective of the recent work of Dan Goodley and Katherine Runswick-Cole (2011:610) who argue that both children with disabilities and their parents are being governed by the power of education systems to limit and control resources. As a result parents of children with cognitive disabilities are being structurally positioned and governed by the triad of policy, process and practice within educational inclusion.

This study found that parents express the need to have more educational choices for their children and to be given a say as to how their children’s levels of funding are established and applied. Parents within this study indicate an awareness of their exclusion from the policies, processes and practices of their child’s educational inclusion. Parents within this study express that they are actively seeking ways to generate their participation within their child’s process of inclusion. Despite this the education system maintains the power to control, define and limit the ways in which inclusion takes place through the combination of policy, process and practice.  All of which currently exclude parents.

This research  indicates that the settings  in which the  processes and practices of educational inclusion take place are becoming key sites through which parents of children with cognitive disabilities  experience disablism (Goodley and Runswick-Cole; 2011, 608; Ryan & Runswick –Cole, 2008:199; Brett,2002:835; Avery, 1999:118) and systemic violence(Goodley and Runswick-Cole, 2011;610).  

seventhvoice:

Yet another amazing blog post on parenting, autism and the power of acceptance.

Originally posted on The Caffeinated Autistic:

I’ve wanted to write something, anything, to the parents of those newly diagnosed for quite awhile. I feel like there are many well-intentioned parents who want to do what’s right for their kids and above all, want to see them succeed, but just don’t have the right information or tools in order to do this. This isn’t the parents’ fault. This is the fault of “professionals” and the media and how we talk about autism.

Let me explain. It has now been about four years since my daughter was diagnosed with autism, and a good 5 1/2 years since we first knew she was autistic (ahem, not that something was “wrong”, but that she had developmental differences that made us investigate further). At the time, autism was an unknown to us. Sure, I’d heard the word spoken as a teenager and young adult, but I had no clue what it…

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Genetic Screening. Just Where Do We Draw The Line And Why?

Genetic testing

 

After watching the debate on Insight regarding genetic screening I have to say that I am more concerned than ever about the increasing  push to expand the reach of genetic screening onto unborn baby’s.

 

Among many of the issues raised but not discussed, were the questions of just what sort of message are we sending to children and adults who are currently living with disabilities or genetic conditions that are now openly being described both publicly and professionally as having diseases that are presumed to greatly diminish their quality of life?

 

Don’t such ideas fly in the face of all the achievements  that those within the disability movement have fought so hard and long for?

 

Are we now to turn our backs on the rights of the disabled just because umpteen different variants of the human condition can potentially be screened for and eradicated before birth?

 

Two of the panel members debating this topic did indeed hold the distinction of having the very genetic conditions being labeled by other panelists as diminutive of their life.

 

Both disagreed with the underlying premise that having a disability or a genetic condition necessarily diminished their capacities to live a full and rewarding life.

 

Both flagged their contention over the possible harm such statements might cause to those already living with such conditions.

 

However, their further contention that viewing disabilities in this way may cause an erosion of the health care services that so many rely on to live their lives was significantly silenced by the story of a mother with a severely disabled child who stated that, if genetic screening had made her aware of her son’s condition prior to giving birth to him, she would have terminated him.

 

The question was then asked of her by one of the panelists with a disability, whether or not having better support and care services available to both herself and her son, might have made  her change her mind, and decide that her son’s life would still be worth living.

 

To which the mother  replied, that having better support services would make her life easier, but that they would not necessarily maker her son’s life any better. So no, the potential for having greater support services would not make her changer her mind on this issue.

 

As the mother of a much-loved son with Autism, I found myself torn by this debate.

 

My pro-active side wanted to agree whole heartedly with the need to pull back on the reigns of prenatal genetic screening and to scream at the protagonists who were all gung-ho for it, that my son, like thousands of others,  although differently able, is still a sentient human being with loves and hopes and dreams.

 

A human being whose right to life is just as pertinent as anyone elses is.

 

Yet, when I looked more closely, there was another side of me vying for my attention.

 

The side of me that drank in and acknowledged that other mother’s pain at having to watch her severely disabled son suffer daily seizures and take in her anguish at knowing that her son’s genetic condition could have been tested for. That she’d even asked for it to be tested for, and yet that testing had not been carried out.

 

As a consequence of this she felt let down and betrayed.

 

Left with a life that she was not prepared for and was not of her choosing.

 

Yet despite this, her anger and sense of betrayal  was not directed at her son,whom she loved and has devoted herself to caring for,  but at the physicians in whom she’d placed her trust all those years ago.

 

To me this issue  and the way it was presented begs oh so many questions.

 

If we place our reproductive trust purely in the hands of physicians then how do we know that we won’t all end up being betrayed?

 

If a woman, who has already decided that she is not willing or able to raise a disabled child asks for genetic screening, is she wrong to do so?

 

And if she’s not wrong, then why are we even having this debate about genetic screening in the first place?

 

On the flip side of the above thinking is the question of whether or not this is even an issue that can be succinctly condensed down into the auspices of a woman’s choice ?

 

Some how it feels as if it is an issue that is so much broader and more intricately embroidered within the more fundamental question of what it actually means to engage with the human condition in all it’s many and varied forms.

 

I cannot see how something so big could possibly ever be defined by the parameters of  personal choice alone?

 

And if it ever is then what are we to think  about the right to life?

 

Would that right to life then only apply to those who have a genetically screened and superior right to life?

 

Would we all begin to live in Huxley’s ‘Brave New World‘?

 

And what would happen to the disability care industry if our governments voted to open the flood gates on genetic screening? Would it slowly crumble and then fade away because hypothetically its potential for market growth would be destroyed? Leaving the thousands who currently already rely on and need that support floundering within an even more inadequate system of care?

 

Would it go from boom to bust with the stroke of just one bureaucratic pen?

 

Just where is the line in the sand to be drawn?

 

And what will that line, where ever it is placed, say about us as a society?

 

Will it define us as a society capable of holding more than one definitive way of valuing life  of decry us as a race of  Darwinian beings interested only in producing selectively superior progeny?

 

 

 

Strangers among us!!! (not written by me) Special needs parents

seventhvoice:

Here’s a rare insight into the world of special needs parents.

Originally posted on tamarasadventures:

Regular Parents vs. Special Needs Parents

Parents, a stranger walks among you. We look like regular parents but we are the hybrid to your standard engine. Our child’s disability altered us, enhanced us. Many words describe us: resilient, creative, protective, emboldened, sympathetic, fierce and determined. We are special needs parents. How do our lives stand apart from your own? Take a look under the hood and see for yourself.

Regular parents soak in the tub when they want to unwind.
Special needs parents consider a bathroom break a luxury.

Regular parents think OT means overtime.
Special needs parents know that OT stands for Occupational Therapy.

Regular parents know the names of all their friends.
Special needs parents have lost touch with most of their friends.

Regular parents tell their kids to wake up and get dressed in the morning. And they do it.
Special needs parents put on battle gear…

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The Unheard Song

Song time,

She signed.

Swaying her hands from side to side,

We are going to sing ‘Grandma’s Glasses,’

Her hands already  beginning ,

To mimic the form of imaginary glasses,

Raising her hands to her head,

She smiled them into readiness,

Before boisterously beginning to sing,

With her fingers signing along

She became a symphony of sighted sound,

An unheard singer,

With a silent song,

Performing the small miracles,

Of transitioning  children’s effort’s

From the world of  can’t to can

As each child’s hands,

Finally began,

Forming their fingers,

Like kissing twin O’s

In front of their own glee filled  faces.

These are the moments she lives  for.

The  snatching of seconds,

 When soundless lips,

First begin,

 Tasting the grins,

Of success.