Friday, 23 August 2019

Find Your Voice All Abilities Choir = Inspiration Porn



For the past two days I've been stewing over whether to write this blog post, but I've come to the decision it has to be said.

We, meaning disabled people, are not here for your able-bodied inspiration.

Now, what do I mean by this?

On Sunday night's Australia's Got Talent, 170 people, about two-thirds of whom are living with disabilities, came together to sing a couple of songs. They are part of the Find Your Voice - All Abilities choir. There was singing, instruments, movement, and dancing.

I watched intently as the camera panned across the group, from the people in the front room seated in wheelchairs, to pausing on one excited girl jumping up and down, then moving to others around her waving their hands in the air and clapping, to a lady with Down syndrome shuffling in her seat, then to a little girl who wore dark sunglasses (we presume she is visually impaired).

A boy started to sing The Lion Sleeps Tonight, into the microphone, and he was good. The crowd erupted and Rikki-Lee Coulter is focussed on - she is crying.

Is it really that amazing that a child with a disability can sing in tune? Or even that disabled people like to sing and feel joy?

Rikki-Lee continued to sob away and the hairs on the back of my neck stood on end. The judges got up off their seats and danced along to the songs.

The choir went on to sing I Want to Break Free with one of the choir members dancing along the front of the stage.

The choir was obviously having a wonderful time, feeling the freedom to express themselves and happy to be seen on TV. The camera continued to pan pausing on identifiable disabilities.

To conclude the performance the judges got up on stage and there were hugs and photos taken.

In all honesty, were they that great? No. Did they sing in tune? No. Did they deserve the standing ovation they received from the judges and audience? No. Did they deserve all the gushy comments that the judges went on to make? No.

I have probably offended someone by saying this, but I am judging the performance against all the other performances that appear on Australia's Got Talent.

View the performance here if you are interested:



***

Now watching this performance as a person with a disability and who has children with disabilities, and being an ambassador for true inclusion, this is what this looked like to me.

To me, it looked like a good example of inspiration porn in video form. 

Inspiration porn is a term coined by the late Stella Young. Inspiration porn is usually an image of a person with a disability doing something completely ordinary - like playing or talking or writing. If it is a picture there is usually a caption like 'before you quit, try'. See the picture below.

The intent of inspiration porn is to encourage able-bodied people to put their worries into perspective. For example, 'That child who is blind is having a great time, I should never feel bad about my life,' or, 'Things could be much worse, I could be like that person.'

As Stella said, these images assume that the people in them have terrible lives and that it takes some kind of courage to live them.

They must be like superheroes.

https://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006


So why do I label it inspiration porn?

It is not a photo with a caption but I still think the concept of inspiration porn applies to the performance. I say this because of the way the performance progressed with the reaction of Rikki-Lee, the judges and the audience.

Let me explain by posing some questions to you.

Firstly, let's look at the reaction of Rikki-Lee Coulter. As soon as the boy began to sing, she started to cry. Through her sobs she made the comment, 'This reminds me of why it's so amazing to be able to be a performer. The pure joy that is coming off that stage is just (she then chokes up).' At the very end, she shouted, 'That was amazing!'

Why was she crying twenty seconds or so into the performance, and why was a group of diverse people singing mostly out of tune (which is an ordinary activity) so amazing?

And secondly, let's look at the judges' comments which I will then address...

Manu Feildel - '...I thought it was very moving, very inspiring and just so beautiful. Thank you.'

Nicole Scherzinger - 'I work a lot with special needs kids and athletes. I'm a global ambassador for the Special Olympics and my aunt's Down syndrome, so this is something dear to my heart. And today you should be so proud because you've shown us that the only boundaries holding any of us back are the boundaries that we hold in our minds. So thank you for that.'

Shane Jacobson - 'The most amount of yeses you can get is 4. I'm going to work towards trying to get you 5 which has never happened in the history of the show... On the count of three audience here we go.....(they all yell yes).... The judges all say yes... Nicole and Lucy Durack then say, 'Actually there's about 2000 people here so it's not 5 yeses, you have 2004 yeses... 2005 yeses.'

Do you hear these comments about other acts? Has Manu ever told another group of out of tune singers that they are moving, inspiring and beautiful? I doubt it somehow.

It is plainly obvious that the choir was not judged like other able-bodied choirs. They were treated differently. I point specifically to the 2005 votes and, 'Never done in the history of the show.' So why did it need to be done for these people? Was it the judges' way of trying to make the choir feel worthy of being on stage? Was it from some self-seeded prejudice the judges may not even know they have - something like, that having a disability is a difficult thing and it takes superhuman strength to get up on stage and sing? Now of course, I have seen judges cry for performances, but normally the tears were a reaction to a truly talented operatic singer or someone similar.


As mentioned, the intent of inspiration porn is to encourage able-bodied people to put their worries into perspective. I bet there were people in the audience thinking, 'I'm glad I'm not like that!' or, 'What am I so stressed about? It could be worse.' or, 'Look at how happy these people are. I shouldn't be worried about that next bill I can't pay.'

I believe that the judges' comments showed ignorance of the case for full inclusion of people with disabilities in society and community activities.

Manu also made the comment, 'I believe there is two things that bring people together like this, food and music.' If that is so, why was this a segregated choir with the majority having disabilities? Why aren't these people peppered through all the able-bodied choirs that exist, or is this choir the only choir they have found acceptance in or even been allowed to join?

This performance did make the performers full of joy - that was obvious and can't be debated. But why did they feel this euphoria? I think it's because they felt valued.

Another comment I debate is Nicole's, 'And today you should be so proud because you've shown us that the only boundaries holding any of us back are the boundaries that we hold in our minds. So thank you for that.' My reaction to that is, 'That is absolute rubbish.'

The boundaries for people living with disabilities are not in our minds. They are physical, environmental, social and historical. There are accessibility issues such as no ramps, or no access to toilets on trains. There are the blatant prejudices of able-bodied people that are imposed on us. We are a product of fear, because people with disabilities have been aborted, hidden away or institutionalized. Many people in the community have not grown up with a disabled person at school or in their life, so they don't know how to react, so they react with, 'They're so amazing.'

People with disabilities are not amazing. They are trying to be equal, live ordinary lives and do what other human beings are doing.

***

Each one of the choir members standing on that stage has a lot to offer society, to make the world a better place. They need to be out and about everywhere in society, mixing and participating in all community groups, not segregated into disability specific activities. And above all they should not be used as inspiration porn for able-bodied people to feel better about themselves.

I hope I have given you something to think about.

To find out more about Jenny go to www.jennywoolsey.com


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Tuesday, 20 August 2019

Don't Limit Me - A Poem


Don't Limit Me

I am not broken like a smashed car, so you don't need to fix me...
Don't limit me
I am not a retard or an idiot or stupid or any other insult you throw at me...
Don't limit me
I can learn when taught so I understand, and I will exceed your expectations...
Don't limit me

I am not a label like on a jam jar, I am multi-faceted like a diamond...
Don't limit me
I am not the sum set of my chromosomes - no that is way too narrow...
Don't limit me
If you have met one person with my syndrome, you have met one person with my syndrome...
Don't limit me
 
I will teach you about your limiting beliefs which aren't mine...
Learn from me

I am not an archaic view of disability - I will not be hidden away or segregated...
Don't limit me
I am not your inspirational porn - don't cry and say I'm amazing because I am doing well...
Don't limit me
I can think for myself and tell you what I want - and that's to be in control of my life...
Don't limit me

If you expect and accept little from me, that's exactly what I'll give you...
Don't limit me
If you speak negatively to me, be aware it will be returned through my behaviour or words...
Don't limit me
If you shove me to the side or isolate me, I know what that means - you don't value me...
Don't limit me 

I will show you your limiting beliefs if that's what you ask for...
Learn from me

Give me wings to fly and I will soar high and free like eagles do on wind currents...
Don't limit me
Build up my strengths and talents so I can reach my full potential...
Don't limit me
Accept me as I am but have high expectations that I will learn and grow and be successful...
Don't limit me

And while you're rethinking your prejudices, know that I am perfect just as I am, and if you take the time to get to know me, you will find that out.


- by Jenny Woolsey ©2019
Mum to Jessica who has Down syndrome



To learn more about Jenny visit www.jennywoolsey.com


Don't Presume my Child Goes to a Special School



Yesterday I took my youngest daughter, who is 12, and was born with Down syndrome, to see a new Occupational Therapist for an assessment. With my daughter's access to NDIS (National Disability Insurance Scheme), we are now able to utilise this service, and I am thankful to the government for this.

Our goal for my daughter having OT is to help build and strengthen her fine motor skills so she can be independent with her life skills and be more proficient with her handwriting, which she finds difficult due to the low tone in the muscles in her hands.

The OT was lovely, and I felt a warm connection with her straight away, as did my daughter. As the assessment progressed and a conversation ensued, which included the obligatory questions such as her age, her likes/dislikes - those types of things, one question made me stop in my tracks and triggered me to write this blog post.

The question was, 'What school does she attend?'

I answered in my casual way, ' Said High.' (I am leaving out the name for my daughter's privacy). My daughter wss wearing her uniform so I didn't think it needed much more emphasis.

The OT's response was interesting. She replied, 'I used to work at A Said Special School (name changed for privacy purposes) and I went to meetings there (at your school).'

The penny dropped pretty quickly. She presumed the school I had given was a special school, not the local regular high school.

I quickly clarified it was the mainstream high school and I was against special schools. She then asked how my daughter was going and we had a good chat about how well she is doing.

Now I am writing about this not to criticise the OT, because as I said she is lovely and we will be going back to her. I am writing this blog post because I think her response is the world's commonly held presumption... that children with Down syndrome go to a special school.

Now this wouldn't be a commonly held presumption if it wasn't so.

In a mainstream high school of approximately 1300 students, my daughter is the only child with Down syndrome. She was also the first child with DS to go through her primary school. It is not the norm. And why not?

Why is there a strongly held belief in Australia that students with Down syndrome will receive a better education in a segregated setting with other intellectually impaired students? Where will the stimulation come from? Where will they experience higher order thinking and thought provoking conversations? Where will they see gifted and talented students? Where will they be exposed to role modelling of what is expected by society? When will they be able to experience the whole range of activities that are provided in a regular school?

When Jessica was about to enrol in Prep we were shown through the early learning classrooms of the special school as they tried to sell it to us as the place our daughter should attend. Yes we could see the students were accessing the curriculum, and one of the little girls was learning to read. But I also saw things I didn't want my daughter to spend day in and day out with. I saw children with poor communication and behaviour, and a general setting that felt like a prison, with multiple locked gates and doors, and fences everywhere.

She was 4 years old at the time and we could already tell that our daughter modelled her behaviour on what the other children were doing.

We had seen a difference in the two settings she was attending. In the local C&K mainstream kindy, she was writing her name, speaking, using the toilet, trying to read books and do what the other children were doing. In the special school kindy she was only using sign language as that's what the others were doing, she was acting like she was helpless and barely used the toilet.

In our hearts we knew the mainstream school would be the best place for her, but there was so much pressure to keep sending her to the special school - and that's where children with Down syndrome went... why would we buck the system?

I am thankful to my school principal, as I wanted to send her to the school I was teaching at, who was not a gate keeper and was happy to have our daughter. If he'd been against having her, I might have been swayed to stay at the special school as this was before I became educated on inclusive education.

My husband often drives past the local special school when it is play time and he has told me about the litttle boy who stands at the fence line watching the cars go past, all on his own, and of a little girl who again sits on her own, under a tree, looking very sad. Do these children want to be there or would they rather be in a regular school with regular children being stimulated by the variety of activities that happen there?

One person who has never presumed my daughter goes to a special school is her paediatrician at the hospital we attend. He has always been excited to hear how she is going, and I love that. I hope he takes that knowledge that my daughter is doing well and passes it on to his colleagues and student doctors.

I read an article today on Facebook about  a lady, Ann Greenberg, who lived in New York in the 1940s. Her child, Jerry, was denied access to a regular school due to seizures and a developmental delay. She had a friend whose baby had Down syndrome and was told to place the baby face down in the pram so no one could see it. These ladies went on to set up their own school which grew larger and larger over time. Essentially they set up a special school system though not identified as such, and in 1953 came under the banner of the National Association for Retarded Children (NARC). Of course the parents in doing this, wanted their children to be educated, and I commend them for that. But because it happened in the 1950s doesn't mean it still has to be happening now.

https://www.ahrcnyc.org/wp-content/uploads/2015/10/History_Of_AHRC.pdf

I conducted a Google search to find out what is being said about special schools to parents, because there are plenty of parents who want their children in these segregated centres. This reality is seen in the building of new special schools, one of which is in my region.

I think these points I found listed on a UK site sum up the basic benefits that are stated by most:

  • Class sizes are smaller, even exceeding one-to-one help in some cases.
  • Work is geared to the child’s individual needs and linked carefully to their own targets.
  • Teaching is matched closely to learning styles and strengths.
  • Children have a peer group with similar needs, so they don’t feel different and find it easier to make friends.
  • Staff generally have an excellent understanding of the needs of the children and how best to teach them.
  • Progress is very carefully tracked and monitored.
  • There are strong links with parents.
Like their mainstream counterparts, special schools must teach the national curriculum and use its assessment procedures, and they have broadly the same duties and responsibilities to children in their care as mainstream schools.

https://www.goodschoolsguide.co.uk/special-educational-needs/schools/special-schools

This sounds pretty convincing doesn't it, particularly if you do not know the research into segregation and how detrimental it can be for the child, and the overwhelming research that says children do best in a regular setting?

 http://www.include.com.au/resources/

Also when I look at these so called benefits, I say 'that is what happens in a mainstream setting', apart from point 1 where there are 6 or below in a class in a special school, or point 4 where the students are of a similar intellectual level.

I wish there were more parents saying they don't want their child in a class of 6, or to just be with students of their intellectual level. It is an illusion that this is a better system.

My daughter will always be interacting with higher achievers so she can hear vocabulary and topics and discussions that will stimulate her brain, and make her brain construct new neural pathways and make new connections in her brain.

The other 4 points listed above happen in mainstream high school. I have constant communication with my daughter's school, I know her work is being monitored just like every other student's is, the pedagogy of teaching and learning is a constant focus in the school and my daughter has an ICP (Individual Curriculum Plan) which links to the curriculum at the level she is at.

With 'diversity' being a buzzword at the moment, it is important for those of us who truly believe in inclusive education, to keep on advocating for our children, and educating  parents, health professionals and politicians, so the children in future generations will have their rightful place in mainstream schools and there will be no presumptions about a child attending a special school, because special schools won't exist.



To find out more about Jenny, visit www.jennywoolsey.com

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