The Illusion of coping…. Exploring the Impacts of Sensory issues for those with High Functioning Autism within the Workforce.

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A key component expressed by adults with HFA (and their parents) when taking into account educational and workplace experience, is  the negation or lack of understanding given to their sensory and social needs.

A pivotal aspect of this is that, regardless of how highly advanced the skill sets of adults with HFA may be, or how pertinent their qualifications are to their positions within the workforce, their sensory issues and social difficulties are still being viewed negatively.

Often these sensory difficulties are interpreted as a failure to meet the needs of the workforce environment by both employers and workforce agencies alike.

“Despite my son’s TAFE qualifications, it is almost impossible for my son to compete for a position in the open workforce. The main reasons are probably his communication problem and not being able to work under pressure.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

One adult with High Functioning Autism described his experience in this way:

“I have found the current emplacement services to be poor. I tire of dealing with a world that places more emphasis on sociability and likeability than on actual skill. I tire of seeing idiots that are less capable than me get positions, just because they can play the social/political games”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

This negation of personal skills due to sociability issues can lead to a harmful sense of alienation for individuals with HFA due to the internalisation of the many negative and damaging comments which erode their levels of self-esteem, within the context of the workforce.

“I’m 45, worked full-time for 29 years, but have not worked at all this year. Two positions I’ve had I held for 10 years each, but in every job I’ve been a complete social failure. I’m reluctant to get another job, and experience another social failing.”                                                                                                                                                                                                                                                                                                                                                                 

Such statements support the urgent need for understandings regarding the importance of finding the right form of employment, both in terms of qualifications, skills, interests and individual sensory and social supports, to be taken into account.

Levels of support currently experienced within the workplace.

Further evidence of the need for appropriate sensory considerations and support can be found in the expressions of those adults with HFA currently within the workforce.

Of the 34 adults who responded to the question:

What types of support are being received at work?

Only 5 indicated receiving support from specialised workplace agencies.

The majority of respondents indicated that their employers were aware of their conditions yet less than half reported receiving specific considerations from their employers.

Of those who did report receiving special considerations those considerations were expressed in this way;

“My employers are flexible with what I can handle, e.g. they don’t put me on customer service or phone work”.

“My boss provides specific instructions for me for my tasks, as well as informing others”.

“I receive instructions in both written and diagram form”.

The levels of support that employers provide in these instances can be seen as minimal.

Only one participant indicated receiving consideration of sensory issues other than social contact through “special lighting for sensory issues”.

When responding to the question as to what types of support would be desired at work, the majority of respondents stated the need for greater understanding, recognition, respect and awareness of their HFA needs within the work place from others. 

A further subset within this group consistently noted the need for greater social skills and communication support as well as the desire to access workplace counselling.

The Illusion of Coping

This survey further found that there were a subset of adults with HFA who express showing an awareness that they appear to be coping with the social aspects of educational or workforce environments but that they are indeed still experiencing difficulties with sensory issues.

These participants describe that, even though they mask their difficulties because of their awareness of the behaviours that are expected of them, they are still experiencing significant social and sensory stress.

“For me, learning how to be social doesn’t make it easier or less stressful because it’s still against my natural grain. If I behave in a socially normal way, then that’s how people perceive me, and I have to keep up that standard which is impossible. I know how to act normal, but I don’t want to have to.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

In this expression the demand placed on those with HFA within work place environments which are not sensitive or responsive to their needs, creates a sense of personal onus on the individual with HFA, to behave in ways that are socially acceptable yet uncomfortable for them.

This is reflected in the following statement in which the illusion or “façade” of successful participation in the workplace is described not as success but as forming the basis for the hope to be able to leave the workforce all together.

“I hope to be able to keep up the facade till the house is paid off so I can revert to total privacy and start to catalogue and read the thousands of books I have.”

Within this study there are several clear expressions by adults with HFA which indicates both their high levels of self-awareness and an acknowledgement of the need to reduce social and sensory interactions by having more control over their work environments in order to create a healthy and sustainable work situation.

“My goal is to have the qualifications that will allow me to have much more choice over type and situation of employment so that I can work in my field but in an environment and under conditions that are conducive to a more balanced lifestyle, mental and physical health and the chance to have my skills acknowledged.  At the moment I work in a retail setting…and it’s having a heavy toll.”

Adults with HFA are beginning to acknowledge, define and give voice to the multiple sensory and personal difficulties they encounter within the workforce.

Their voices are expressing that although the perceived ideals of success for adults with HFA in the work force have predominantly been based on the ideal of full-time employment, or the level of income achieved, there are also other determining factors which contribute to workforce success for adults with HFA, which are far more complex and require greater recognition.

Central to these issues are the needs for those with HFA to be able to:

Successfully engage in areas of personal interest both within education and employment.

To have their skills and qualifications appropriately utilized and recognised.

And to have their sensory and social requirements understood by employers and taken more clearly into account within daily workforce practice.

 Conclusion

Overall the experiences of adults within this survey suggests that there is a significant disconnect occurring between the policies designed to create educational and employment equality for adults with HFA and the lived experiences of those with HFA.

This disconnect between policy and practice that can be viewed as operating within 3 key areas of experience.

Lack of appropriate educational opportunities and support.

Lack of support within employment agencies and lack of opportunities within the field of employment.

The need to recognize that the current negation of the skills of adults with HFA are being further compounded by a lack of understanding and accommodation of their sensory needs within the workforce.

These 3 areas of distinction lead both parents of young adults with HFA and adults themselves, to question and contest the validity and success of policies that preference under resourced, unsupported, misunderstood and unfulfilling workforce participation for adults with HFA, above honouring and acknowledging their needs for self-esteem, recognition of qualifications and sensory and social supports.

A key way of addressing these issues would be for government initiatives to follow the suggestions of adults and parents who consistently argue for the need to create both education and employment programs that build on and harness the individual skill sets of those with HFA whilst acknowledging their sensory and social needs instead of continuing on with generic or blanket approaches which create frustration and a sense of harm for adults with HFA.

The benefits of taking an individually tailored approach toward education and employment may create the potential to both activate and validate the diverse skill sets adults with HFA currently demonstrate through their participation within voluntary organisations.

In this way workforce policies may be able to offer a new way of perceiving and understanding the interests, skills and potential of those with HFA in a manner that increases self-esteem through recognising both the qualifications and needs of adults with HFA.

Such measures would enable adults with HFA to successfully and safely translate their skills into equally sustainable and fulfilling workforce participation.

Research analysis compiled, conducted and written by Seventhvoice.

 

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

 

Research Findings Reveal the Lack of Support Currently Being Given to Young Adults with High Functioning Autism within higher education and the workforce.

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Given that educational achievements have traditionally set the benchmarks for employability, the lack of assistance and support given to young adults with high functioning autism, particularly within the later stages of schooling, forms an area of growing concern.

Research findings indicate that previously established support systems either disappear or are significantly absent during those key periods when young adults with HFA are transitioning from high school to College, TAFE or out into the broader work force

Parents state that toward the final years of their young adult’s education they experience having to seek out other resources and support systems on their teenager’s behalf due to the lack of services made available to them within higher educational environments.

“When my son reached Year 11 Level, the college which my son attended said they no longer had a curriculum (modified) available to him”.

“When my son was in Year 11, we were told by the principal and other teachers that they could do no more for him and that he was actually a distraction to the other children in his class and were holding them back from reaching their full potential. We were told that he would not gain anything by coming back to school the following year! “

Statements such as these indicate the existence of the fundamental gap in equality experienced  by young adults with high functioning autism within the current educational system.

Given that a key premise upon which governmental policy is currently based, relies on the ideal that equal educational opportunities for those with disabilities, equates to the prospect of equal employment opportunities (Oliver, 1983, 1996) evidence of this gap is worrying.

The existence of this gap in equality is further reflected in the lived experiences  of adults with HFA, who indicate that the ideals of  equal educational outcomes, do not match the realities of trying to attain equal opportunities both pre and post education.

At the end of their young adults education, parents expressed that their loved ones were being ‘shut out; of  further educational opportunities and instead being exposed to a lack of resources within the broader community.

“As soon as he turned ’16’ – they just wanted him to leave. There was no guidance or support to transition him to TAFE. I had to do all the research on my own. When he finished at TAFE there was no support what so ever for career planning + engaging work. It was a very frustrating process. “

 

Parental expressions of frustration at the lack of appropriately formed educational spaces for young adults with HFA were further exacerbated by the lack of interest shown by workforce agencies in seeking to engage young adults with HFA within their specific areas of interest or talent.

“After leaving school he has, as a last resort, placed in a facility for severely mentally challenged people, where he had no direction and usually washed staff cars or windows, My son is a talented artist and musician but the talents were never explored by any professionals. “    

Parents whose young adults were not employed reported  that the systemic negation of their sons/daughters particular interests, needs and traits both perpetuates and reinforces the wider problems that young adults with HFA face within the workforce.

“There are just NO OPTIONS for individuals with complex needs/ASD.   It is extremely frustrating that even in this environment with the profile of autism that the only comment in a supported employment IEP was “you need to improve your eye contact”.    School was tough but since leaving school trying to cope and source options is mission impossible.  I would urge, no make that plead Aspect ,to work with providers to source options for these young people.”

“No proper understanding of his disability by government, the employment support agencies and potential employers. He can’t do interviews. “                                                            

“Lack of true understanding from agencies of her ‘quirks’ make finding /keeping a job impossible”                                                                                                      

 

Parents describe this sense of negation as further manifesting in the severe  lack of understanding and support given to attaining employment opportunities which reflect the interests, qualifications, talents and needs of young adults with HFA as a whole.

“My son has to do jobs that are boring to him. He gets fired regularly because of his lack of understanding or that of his employer. He would rather be doing something graphical. “

Parental responses also indicate that there may be a considerable amount of disparity  occurring between the definitions of success applied by workforce agencies and those applied by young adults and parents.

“He has a Diploma in library and Information Services which he only partly uses in his job at UWS. The employment provider found him the job at Woolies 5 years ago and has made no moves to change him to anything more challenging and has now ‘left’ him as he is so ‘successful’  “

This sense of disparity is further expressed by parents whose young adults are currently engaged with the work force in diverse areas of employment ranging from full, part-time and casual positions in sheltered work shops, supermarkets, office work, computing, IT and electrical work through to those running their own businesses.

Within this section parents note two key themes. 

Firstly, that although their son/daughter may be working, often that work is acquired through a long process which neither necessarily addresses nor validates the qualifications they hold in their already established fields of interest, talent or expertise.

“It took 20 months for my son to find a job. He spent 6 years at university and has been working for 18 months in Woolies/Bunnings stacking shelves” .

“My son is not working in the area in which he gained his University qualifications but is using some of his writing and computing skills.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Secondly, that whilst adults with HFA may hold and maintain higher degrees, skills or qualifications than those required to perform their current jobs, they are still experiencing an overall lack of responsiveness or understanding from both those working within employment agencies and employers, who refuse to appropriately acknowledge their qualifications within workforce positions.

“His qualifications are in Library and Information Science but librarians were un-supportive generally of his special though not particularly difficult to accommodate special needs.” 

Parental expressions further indicate that the area of  volunteer work  currently offers one of the few areas in which adults with HFA are being given a way to show case, build on and explore their skills. 

“He has only once been given an opportunity to use his computer skills in voluntary work that ended after eighteen months.”

The desire to activate their skills and participate in areas of interest within voluntary work is reflected in the experiences of adults with HFA within this survey who report taking part in a diverse range of positions including volunteer fire fighter, zoo keeper, computing and IT work and assisting those with disabilities.

For many, volunteer work provides a way to both  access and increase their already existing skill sets, whilst demonstrating their capacity to effectively work within their fields of interest.

This significantly indicates that adults with HFA are willing and able to step into those roles which meet their skills, qualifications and interest levels.

 Yet despite being able to demonstrate holding the appropriate skill sets and capacity to work this survey has indicated that  adults with HFA are still facing significant hurdles when seeking paid employment.

Those hurdles centre around the lack of understanding in regards to the needs or “quirks” of individuals with HFA and  are reflective of the overall lack of awareness  described as existing by parents and young adults themselves, within supported workforce programs, employment agencies, employer attitudes and the broader community.

All research  analysis  conducted and written by seventhvoice as derived from  2011 nation wide survey.

 

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).  

Parents of the Past

One thing that strikes me as being  so very wrong within the disability community is the overwhelming lack of recognition and respect afforded  to the parents of the past.

Over the past 4 decades inclusion has been achieved primarily through  the efforts of multitudes of parents, who have turned their hearts and  their minds, to the task of creating social and educational equity both for and on behalf of their children.

These brave parents of the past battled against levels of discrimination and prejudice that thankfully we can now only imagine.

They were the first to call for the recognition of their children’s basic human rights.

They were the first to confront the lack of knowledge, awareness and acceptance of their children within mainstream society.

They were the first to throw their shoulders against the walls of segregated education.

They were the first to rally around and raise awareness of the need for greater educational support, teacher aides  and social skills learning programs in schools.

The parents of the past were the ones who knocked down the very first walls.

They are the ones who  have  constructed the gateway to the  social and educational inclusion that so  many of us now gratefully walk our children through.

Over the last 4 decades they have been joined by successive waves of parents equally as committed to  taking on the challenge  of creating open hearts and minds.

Yet these parents of the past, to whom we owe so much, are rarely acknowledged or even mentioned within either the disability community or  society as a whole.

It’s time we paid homage to those who have gone before us.

Our generation did not begin the process of inclusion.

We were not there at the start of the fight.

We need to acknowledge that our current successes in gaining support and understanding for our children simply, would never have happened, without the courage, persistence and strength of the parents of the past.

So if you know an older parent of an adult with a disability, please do not disregard them as if they are irrelevant because they may be no longer in the fight…..

Instead, take the time to thank them for their contribution to the laying of the  path, you are now fortunate enough to be walking on.

 

The Medicalisation of Difference, Homosexuality, Women, Pregnancy and Birth

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Kate Cregan (2006), in her work “Mapping The Human Body”  sites the example of the non existence of  homosexuality until it was labelled and defined by the medical fraternity in the late nineteenth century as a clear and present example of the  very capacity of the medical system to both construct label and define it’s meaning.

 

“Homosexuality became known in a medico-legal way within particular knowledge systems that there after have controlled its meaning” (Cregan, 2006 :46). Deborah Lupton (2003) in her work  ‘ Medicine as Culture’ also draws attention to the way in which the medical establishments definitional power is at play in the twenty-first century siting the medical professions latest assertion that genetics may be able to predict illness as  evidence that“ the knowledge base of scientific medicine has encroached even further into defining the limits of normality and the proper functioning and deportment of the human body” (Lupton, 2003:1).

 

According to Lupton (2003) this desire for the control and regulation of the human body is particularly pertinent to pregnant women enmeshed within  a health system that  seeks “increasing  control over women’s bodies” through  medicalization and surveillance (Lupton,2003:158).

 

The regulational and  definitional power with which medical institutions control and regulate the female body can be seen clearly in Karen Lanes work on pregnant women.   Siting Ulrich Beck’s analysis of risk in the modern world, Lane shows how the very notion of ’risk’ has now, through a medically induced process, become synonymous with the biological acts of both pregnancy and of giving birth, so much so than women who choose not to give birth in a hospital setting are often accused of not caring for or risking the health of their unborn babies ( Lane, date, page).

 

The irony that  for hundreds of years giving birth has been regarded as a ‘natural’ biological act that has now been medicalized beyond the point of individual choice for the women concerned, indicates the immense capacity of  medicalised perceptions to invade and persuade social thought and individual behaviour (Lupton,2003: 159). As Norbert Elias noted  “this kind of dictum ignores the wide variability  of bodily development and leads to  the patholigisation of what are essentially natural bodily functions” ( Cregan, 2006: 30).

 

The control mechanisms set in place within the debate over the safety of homebirths are themselves defined by the medical establishment that provides the very power base with which it seeks to regulate and control the human body and clearly earmarks how in  “post modern embodiment, we have internalized the control mechanisms that are set in place by various authorities of delimitation institutionally legitimated epistemologies”  (Cregan, 2006: 59).

 

The fact that pregnant women even feel the need to seek medical permission to engage in a home birth  provides proof of just how medically regulated and controlled such biologically natural processes have become and reinforces Foucault’s initial observation that such definitional capacity “results in a more subtle and diffuse power by which we internalize regimes of control and learn to self-regulate our selves through the regulation of the body” ( Cregan, 2006 :41).