Monday, 14 October 2019

World Mental Health Day 10 October


A few days ago it was World Mental Health Day. I thought I needed to write a response to the day as it is a personal day for me.

The purpose of World Mental Health Day was a day for global mental health education, awareness and advocacy. It is an initiative of the World Federation for Mental Health to raise public awareness of mental health issues worldwide. In particular it encourages everyone to look at mental health in a more positive light, in an effort to reduce stigma and make a way for more people to seek the help and support they deserve.

World Mental Health Day Australia Website


So why is this day significant to me? To put it simply, because I have suffered from anxiety and depression since I was a child (though as a child I did not know that's what I was experiencing).

Growing up, my anxiety and depression went hand-in-hand with how I was treated by other kids and adults. If you are unaware, I was born with a rare craniofacial syndrome, at a time where anyone with a severe difference was hidden away. My parents rebeled against this and pushed me out into the world. It wasn't easy for them, and it certainly wasn't easy to me.

I have vivid memories of situations where my pulse was racing, fear was coursing through my veins, and I fled instead of fighting. I developed acute social anxiety which haunted me for most of my adult life. In high school my obsession with perfection led to more anxiety and I began to avoid exams and assessments I didn't think I was ready to take, or weren't completed at my high personal standard. None of this particularly worked for me, and without help, these behaviours followed me into my teaching career.

Teaching is not easy at the best of times, and you are expected to be self-confident, out there, be able to talk to anyone. I struggled to begin with because of sabotaging thoughts, and at times during my 25 year career in the classroom, would need mental health days to try and get my anxiety under control.

The beginning of my depression I can't pin a date to. I know as a teenager I was pretty mixed up, but aren't most teenagers? My face was changing and my facial syndrome was becoming more severe. I desperately wanted a boyfriend but no boy would be seen with me in that way. Plenty of boys were friends but for me I needed more to know my self-worth. In my mind, no boy loved me so I was worthless.

The first black hole I remember was seven years into my first marriage. The marriage had been volatile since the days of dating. Anyone who knows domestic violence, would have seen the signs and predicted what was going to happen. Me, Miss Naïve, and wanting desperately to be loved, saw some things I didn't like, but my desperation was way more important than how he treated me. Remember I had no self-worth.

By 7 years I had itchy feet and wanted to leave. I remember voicing this at my cousin's going away party. It took 3 more torturous years to be able to, and when I did it was with my bare teeth. I was caught up in that domestic violence cycle and trapped like a fly in a spider's web. I tried to leave on multiple occasions but was brought back, and then the treats to end my life if I dared leave again began. My mind spiralled down into the deepest darkest blackest hole I've ever been in. I could not see any sunlight or any way of getting out alive. So my mind decided that suicide was going to be my only choice, and I started thinking about the options and planning what I would do and when.

At the same time we were going for marriage counselling, and I would curl myself up in a fetal position on the couch and listen to my husband say that everything was my fault and he wasn't going to change. An idea came into my head and I asked the counsellor if she thought it would be an okay idea if I went home for the weekend for a break. Now my husband would never have allowed this and I expected him to disagree, but he said that was okay. He would let me go.

Upon appearing on my parents' doorstep the tears began to drip down my cheeks and I told them what was happening. I had put on such a façade that they had no idea. My dad gave me the biggest hug and told me that I wasn't to go back.

It wasn't easy not going back. My ex- tried everything he could to win me back, but with my father's help, I stood strong. With parental and friend support, and medication, eventually the depression eased and I saw the sun, but I was a very messed up lady psychologically. I had completely lost who I was on top of the depression.


I met my current husband soon after and bouts of severe anxiety raised their heads throughout our marriage. After my first child was born and we found out she had my craniofacial syndrome, depression hit me again. It was post-natal depression. She wasn't sleeping or breastfeeding properly, and I felt a lot of pressure to breastfeed. I wasn't coping with my kaleidoscope of emotions, childhood triggers that had never with dealt with, and the fact that I wasn't being perfect. I did eventually recover.

I think the next major bout of depression was after my third child was born and diagnosed with Down syndrome. I plummeted upon hearing the diagnosis and scared about what this all meant. I think it took about a year to finally accept life as it now was. I would have smaller relapses after the first year, so my doctor put me on medication to help stop the rollercoaster ride I was on.

My last major bout of anxiety and depression led to me leaving my 25 year career - teaching. The kids were having surgeries and again I was trying to be the perfect supermum, ignoring caring about me, and giving, giving, giving. A challenging class was the final straw as they say. I fell down that black hole again and my doctor told me that he would not be signing my back to work papers, which he didn't. I ended up leaving with TPD. Because this wasn't my choice, I lost my identity and grieved the job I loved. I felt like a failure.

As part of my treatment plan, my doctor sent me to see a psychologist. I had wanted to see a psychologist on a number of occasions but only crazy people see them, don't they?! I thought it would be embarrassing to say I was, so I would pick up the card on the reception desk, then put it back down again. Well, now I had no choice.

Going to see the psychologist was the best thing I have ever done in my life for myself. She went right back to my childhood and we unpacked my life. There were so many lightbulb moments and tears. I began to understand myself, and forgive myself for choices I had made. Buried secrets came to the surface as well. At each session, weights were taken off my shoulders, and I felt lighter. It was an amazing experience.

I then decided I would tell people I left teaching because of anxiety and depression, to help spread awareness, and to encourage people to go and get help.


If people ask me, 'Are you okay?'' and I'm not, sometimes I will say, 'My head's not in a good place at the moment,' or sometimes I will say, 'Yeah,' even if I am not. And that is true I am sure for others.

When you are in a hole, it is very hard to get outside of your mind to ask for help. I can totally understand why people do commit suicide, as I've been so close. When your mind is wrapped in 'this is all too hard' you don't care about who might be left behind or who you might hurt - you just want the pain and agony in your head to stop. But if you are feeling this way, I must encourage you to reach out your hand to someone. I have found sitting in the sun, or watching the waves at the beach, or just having someone talk to me about a positive event that I am going to be involved in, all help switch the switch in my mind from negative back towards positive. It brings hope for the future.


So I would like to leave you with three tips for maintaining your mental health:

1) Take time for you

This is so important and I learnt this the hard way. You don't get a gold star or a special seat in heaven if you are supermum. Supermums burn out and fall in heaps, and then are of little benefit to anyone. Your desire should be, a well balanced mum who takes out from the family to do some fun things for herself.  Take that art class, meditate, go shopping on your own, visit those friends … You need to be you, just as much as you are a mother, or wife, or worker etc.

2)  Exercise and eat well

Go for that daily walk. I remember when I was seeing my psychologist I was accountable to her for walking, and even though I didn't feel it helped my psychological state, the research says it does release happy chemicals. Eat well as much as you can. I put on a lot of weight as I was self-soothing with food. Easy to do, but I good idea not to. While you out and about let the sun shine on your skin as Vitamin D also helps you to feel happy.

3) Take the medication and see the psychologist

A wise friend who was a nurse told me, 'If you broke your arm, you would go and get it fixed. You have a problem with the chemical imbalance in your brain, go and get it fixed.' That made total sense to me. This is where the stigma of mental illness comes from. People think because it is your brain that it isn't as important as a bone fracture or your heart - that is absolute rubbish. And people who seek help are not crazy - in fact they are smart.

Look at this picture for more ideas:



If anything in this article has triggered you please ring Lifeline on 13 11 14    or visit your local GP to get some help. xx


To see more about Jenny, visit her website at www.jennywoolsey.com.


Saturday, 12 October 2019

World Sight Day 10 October



Today is World Sight Day. A significant and personal day for me.

So what is it?

World Sight Day is an annual day of awareness which focusses global attention on blindness and vision impairment, and is held on the second Thursday in October each year.

The day was established by the World Health Organisation in 2000. World Sight Day is the main advocacy event for raising awareness about blindness and impairment.

http://worldsightday.org.au/about/

Did you know that 90% of global blindness and visual impairments are preventable? This is mainly because people do not get their eyes checked regularly and leave it until damage has begun.



So why is this day significant for me? To put it simply, I am visually impaired. People ask me if I am legally blind and the answer is no, not quite. There are very strict guidelines and my right eye sits just outside of the definition. But even though I am not legally blind, I need a white cane to keep myself safe, and I also require other low vision aids such as magnifiers and binoculars, and a GPS to see and get where I need to go.

I recently spoke about my vision impairment and how for most of my life I have hidden it as much as I could. You can watch my talk here:



Now, as you heard in my presentation, my visual impairment was caused by complications in my facial reconstructive surgery. My optic nerves were damaged. Optic nerves are like cables carrying information from the eye to the brain for processing. They consist of over a million nerve fibres and give the brain the information it needs to see clearly. Once optic nerves become damaged,gyv they turn pale and grey, and there is no cure. Optic nerves cannot be repaired.

Read this article to understand - Optic Nerve Atrophy

In my case there was prolonged pressure and swelling of particularly my left optic nerve, which severely damaged it, rendering the eye useless. I have extremely dark and blurry vision and a black blind spot, and cannot read at all - I am legally blind in that eye. In my right eye my visual acuity was affected, I have no depth perception and I became colour blind. In my right eye the optic nerve damage also led to a condition called hemianopia which I have written about in a previous blog post. Hemianopia is where you only see out of half your eye. See the picture below. This is similar to how I see out of my right eye.


Apart from the corrective glasses for my right eye, there is no cure. Because of my lack of peripheral vision in my right eye I cannot drive, and I need a white cane for my personal safety.


I was resistant to having a white cane. It was only last year, after struggling for just over 40 years, that I decided to get help. With my husband's deteriorating health I had been venturing out alone, and experienced  some scares - from falling into the train, to nearly falling down a very long flight of stairs, to being scared by people bumping me on my left side. I was also always stressed wherever I went where there were lots of people, as I would always run into people or spend the whole time flicking my head from side to side, to flicking it to the ground then back to the front. I didn't enjoy being out and about and would become quite anxious.

I am sure you would agree that I needed the cane.

So why was I resistant? Why have I left it until in my 50s to get one?

To put it simply, I didn't want my life to change. Having a cane makes you stand out, pointed at and stared at. As I say in my presentation, I had battled being accepted by society growing up, and was teased for looking different. Once society deemed me as 'you now fit in', I wanted to stay that way. In primary school I would sit in the front row and in high school the only help I accepted was a wooden stand for putting my typing book on, so I could read it. Apart from that I sat up the front if my friends were, but if they sat at the back, I copied off their books. I refused to wear glasses because glasses weren't cool and not many people wore them, and those who did, were teased.

When I went to university, I began to wear glasses as I didn't know people well enough to copy off them, but only when I absolutely needed them - not all the time. In fact it was only maybe 5 years ago, when glasses were becoming trendy, that I began to wear my glasses all day - and what a difference that made. I remember my ophthalmologist being stern with me, saying, 'Jenny go and find a pair of glasses that you really like, and wear them all the time.'

But still it was hard. I could only see so far. I couldn't read menu boards and was too self-conscious to say anything, so I would only go to the takeaways I knew the menu of, and I would order a limited range.

Now I have my white cane (which is actually pink), the world has opened up to me.



So how has it opened up the world to me?

Because I no longer have to pretend, my mask has been torn off,  and I am able to say, 'Please help me.' or 'What does that say?' Most of the time people get out of my way, so I'm not bumping into people and not having the number of scares I was from people coming up close on my blind side. The cane enables me to check the depths of stairs, and it shows me where stairs are that don't have yellow paint lines on them,  and the depth of the entrance to the train, so I haven't fallen. My cane identifies obstacles. cracks in the path, and curbs before I reach them.

Once I made the decision to get my cane, which I have named Seymour, it took a while to get used to being stared at again in public. It triggered uneasy childhood memories. Fortunately I've had no bad names thrown my way so that has helped me to keep going. I've heard lots of parents talking to their children about what my cane is for, and that has to be a good thing for diversity and inclusion for the future generations. It would have been so easy in the first couple of months to put the cane away, or just use it around friends, but I knew that wasn't when I needed it. I specifically needed the cane when I was out alone, and in busy places. I also found that when I didn't take my cane, I either walked into something or someone, or I stumbled down and over curbs and sidewalks. It became a no brainer in the end.

I have noticed that when I am out and about I rarely see another person with a cane, which I always think is strange. Where are all the visually impaired people? I think there are many people who like me, don't want to show the world that they can't see and are pretending they can see better than they actually can.

So to end this blog post, I am going to give you a few pointers that I have come to realise from my white cane journey:

1) Be positive about getting help
If you need the help, you need the help. Today's society is a lot more accepting in many ways than the world was when I was growing up. Yes, there is still a lot of prejudice and bullying, but I have found with the 'coming out' of my visual impairment, people have been kind and accommodating.

I definitely have my 'woe is me' days, and it infuriates and frustrates me that I cannot drive, but I can't change things, so I can choose to live my life with a negative attitude, or I can be positive and grateful for the vision I do have. And hey people jump out of my way most of the time, and if I put my imagination to work, I can pretend I am a queen or Moses parting the Red Sea. That's something to be positive about!

2) Put your head up and be confident
No matter what your difference is, or your disability that you are coming out with, put your head up and be confident. You deserve to be in this world and you are perfect just the way you are. Embrace your difference and own it. When I was having my orientation and mobility training with the Guide Dogs, that is one of the first things they taught me. Stand up tall, look ahead, and walk straight. I believe walking this way is important. I don't walk with my head down, wanting the world to not notice me, or help me as I once did. I also believe I am less likely going to be a target of crime if I look confident.


3) Live your best life
I could quite easily sit at home and pick the fluff from my navel, and not go anywhere unless someone is willing to take me... but I made the decision that I wouldn't. You only have one run at life, and I want to have experiences and see things. One of the activities on my bucket list was parasailing and this year I was able to - and I absolutely loved it! This past month I took my eldest two children to Sydney for a sightseeing holiday. It is a matter of deciding what you want to do, and then how you are going to do it, with the adjustments or help you need.


*

To finish with, on World Sight Day, I must encourage you to visit an optometrist and have your eyes checked. Most problems that occur with eyes that aren't related to trauma as mine were, can be treated or if not, they can be closely monitored. I shake my head when I see people who need reading glasses, trying to make their arm as long as possible to read something - go and get some glasses!


To find out more about Jenny visit her website at www.jennywoolsey.com






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

Wednesday, 14 August 2019

The Generational Pursuit of an Ordinary Life - Crouzon and Down syndrome



On Monday I presented a talk to a local Probus Club about my parents' plight for me to have an ordinary life growing up. You see I was born with a rare craniofacial condition, Crouzon syndrome. That's me in the photo above. No one else in my family had the syndrome and Mum and Dad knew no one with it. Statistically the incidence of being born with the syndrome at the time, was 1 in 250,000 so why would they?

My parents were told by many in society that I wasn't valuable and should be hidden away, just because I looked different. At that time institutions for the disabled were in full swing, and freak shows were still in existence in the UK and America. My forward thinking parents ignored this prejudice, and actively fought against it. It was far from easy for them but they loved me and had a vision that I would have an ordinary life like my two brothers. My life could have been well different and much less successful and happier, if my parents had caved into the pressure that was exerted on them.



The second part of my talk to the Probus Club centred on my own plight to fight the prejudices that I have faced with one of my daughters. You see, my youngest was born with Down syndrome.

I started at the beginning of my story which is where most stories start. I shared that I had a very strong negative reaction when I was told my daughter had Down syndrome. She was 4 weeks old and the geneticist bluntly delivered the news with a question, 'Why didn't you know you were bringing me a Downs baby?' Well upon posing this question to my pediatrician, it seemed she wasn't sure due to my craniofacial syndrome and passed the buck to the geneticist.

The geneticist's kind, caring (sarcasm) delivery sent a chill down my spine. I had seen my daughter's oblique shaped eyes at birth but had pushed them aside as nothing had been said. Those eyes flashed before me as I digested the acid-tongued news.

This information about my daughter wasn't what I wanted to hear. I walked out of that office as if I was a zombie leaving a grave. The agony was cemented by a phone call the next day confirming she did have Down syndrome, and it was the most common type - Trisomy 21. In Trisomy 21, there are three copies of the 21st chromosome, instead of two, in every cell of the body. According to Google, that was also the worst type to have.

My world was shattered. But why? I didn't know anybody with Down syndrome, so why was I shattered? What was behind that reaction? Why wasn't I happy? Why wasn't I going, 'That's okay. She'll be awesome!'

I think I can answer that in one sentence... Society told me Down syndrome was a terrible thing for my child to be born with. 

At every previous scan, for all of my pregnancies, the sonographer performing the scan had meticulously looked for, measured for, and I'd had blood extracted to test for... Down syndrome. We had also been asked on each occasion if we wanted to have an amniocentesis to test for Down syndrome. Why would they do all these things, (and offer abortions up until birth as has happened with friends), if this wasn't going to be a life sentence? Anyone would think that Down syndrome was equivalent to being a mass murderer!

I am sure you can understand my reaction. Most humans would feel something negative inside, with this scaremongering. But the thing is I totally adored my baby before this 'label' was put on her.

People's reactions to my news weren't generally helpful either. 'I'm sorry,' was the standard reply, or if they were trying to be positive they would say, 'People with Down syndrome are always so loving and happy!'



Fortunately, I did come to my senses pretty quickly because the love I had for my daughter shone more brightly than the label.

Did you know that a large number of babies with Down syndrome are placed into foster care because their parents do not want to take the journey I was going to take?



In the past few years I have been researching and learning about the history of disability. I now know why I was rejected by society as a youngster, and it is the same reason people with Down syndrome still are being rejected - and aborted. They are seen as a lesser form of human being. They are seen as being imperfect. They are seen as Hitler saw the Jews - an inferior race.

You would think that in present-day 2019 we would have progressed a lot further in our acceptance of differences. But sadly we have not. As I explained to the Probus Club members, while women are still striving for equal pay and racism is rife, people with disabilities will not get a look in.

Yes, there has been some progress made. Like my parents were pioneers paving the way for me and others with facial differences, there are parents today making paths for their children with disabilities. Some of us have our bulldozers out and are pushing hard on the weeds and rocks.

Target has become inclusive in its use of child models. When you flip through the pages of its catalogues and look at the advertising in its stores you will see children with Down sydrome and other disabilities. I commend Target for this.

http://www.startingwithjulius.org.au/target-award-winning-adinclusion/

Our world is a better place for having a kaleidoscope of humanity.

Another fact I shared with the members was the alarming rate of terminations of prenatally diagnosed fetuses (I call them babies). In Australia, the statistics say that 9 out of 10 prenatally diagnosed babies with Down syndrome are aborted. The article below states it is 93%. This includes the false-positives. Killed. Australia should be hanging its head in shame.

https://thenewdaily.com.au/news/national/2017/08/17/down-syndrome-birth-terminations/

After the meeting, one of the members came to me and told me his daughter's story. She'd been told prenatally that her baby had Down syndrome. She was offered a termination but declined it. When the baby girl was born, she did not have Down syndrome.

In Iceland, it is 10 out of 10. Iceland is trying to eradicate people with Down sydrome from their society.

This makes my blood boil. Who gives these doctors the right to play God?

Down syndrome used to be considered a common condition, now it is listed on the Rare Diseases database.

As a human race, our desire for perfection seems to sit high on the scale of what's important. What happened to love?



I will continue to fight for my daughter and the other wonderful human beings who are born with Down syndrome. There has always been people with this syndrome, and as long as there are parents who will give them life and are willing to go in for battle for their children, there always will be.

These people offer their own take on the world and are able to make significant contributions to society. They are perfectly perfect.

My daughter is now 12 and we keep hearing the words, 'She's so amazing!' I must admit I get sick and tired of this, but I know we have a very different perception of what she is capable of. There are no limiting ceilings in our definition of Down syndrome. And her 'amaziness' is ordinariness. She is in mainstream high school, participating in regular school and community activities, and breaking down attitudes and prejudices of those around her.

One day I know I will see her living her own independent life, with a fully paid job, a partner if she wants one, going out and about pursuing her interests. I will see her having an ordinary adulthood just like my parents gave me.




To find out more about Jenny Woolsey who writes and speaks on Be Weirdly Wonderful! Embrace your difference, go to www.jennywoolsey.com



Thursday, 18 July 2019

I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome



 I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome

In 1866 British physician, John Langdon Down, named Down syndrome. While working as the medical superintendent at the Royal Earlswood Asylum he described the characteristics of people with Down syndrome residng there, as being similar to the people living in Mongolia (he had a series of ethnic race photos he compared them to). He believed people with Down syndrome were a result of ethnic degeneration. The term 'Mongolian idiocy, Mongoloids and Mongolism' became the norm. It wsn't until the 1960s Down's theory of Mongolian origin was discounted. This was after the French Pediatrician/Geneticist Professor Jerome Lejeune discovered that people with Down syndrome had an extra chromosome - three of chromosome #21, and the syndrome was observed across many ethnicities. The term Down syndrome and Trisomy 21 then became the accepted terms. 



During the first half of the twentieth century, the majority of children with Down syndrome were placed in institutions like the one above  – frequently soon after birth. The parents were convinced by doctors that the child was less than human and their needs would be so great, their families would not be able to raise them. The parents were told that the child would be taken good care of. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives.

As a parent of a child with Down syndrome, when I read this history, blood boils in my veins, and when I hear stories of parents who bucked the system and stood strong, I rejoice. Today, in 2019, there are still many barriers and prejudices, towards people with Down syndrome. I have battled them and will continue to I am sure. I refer to low expectations, being excluded and segregated, 'she's so amazing' comments when my daughter is doing what other regular children are doing, 'inspirationnal' posts about adults with DS doing ordinary things such as working and so on. 



Thankfully there were parents throughout history who refused to give their children to institutions and chose to raise them as ordinary children and give them ordinary inclusive lives. Let me tell you about one such set of parents, General Charles De Gaulle and his wife Yvonne.



General Charles De Gaulle has been well known throughout modern history as the leader of the Free French Forces. Something less well-known was that his youngest daughter Anne (January 1, 1928 - February 6, 1948) had Down syndrome.

The public perception at the time, was Down syndrome occurred because of the parents' alcoholism, venereal disease or from ethnic degeneration as I talked about above. The De Gaulles rejected these fallacies, and refused to put her in an institution, instead choosing to raise Anne like their other two children at home.

It has been said often that Anne was Charles' favourite child and he called her, 'My joy'. Charles was described as a man who ranged from cocky to stoic by nature, but a loving happy father, who would read stories and sing songs to Anne. It is said that he showed Anne an affection that he rarely showed others, even those in his own household. Anne was raised to feel no less or different than anyone else. (I love this!)

Charles always carried a photo of Anne with him, and in 1962 the photo stopped a bullet from ending his life in an assassination attempt.

In 1948, Anne succumbed to pneumonia, a month after her 20th birthday and died in her father's arms. Upon her death, Charles is said to have remarked 'Maintenant, elle est comme les autres.' ('Now, she is like the others.'). When Charles died, he was buried beside his beautiful daughter.

***

I had goosebumps when I first read this story, because I know how hard it would have been for the family to raise Anne with society's prejudices.

Stories like this one inspire and motivate me to continue advocating for people with Down syndrome and to show society that these people are valued, worthy and deserve to have ordinary regular lives like everyone else does. And it is an ordinay regular life, full of love, that I am striving to give my daughter, 'My joy'. Thank you, Charles and Yvonne De Gualles for all that you did for Anne and for future generations.


Jenny Woolsey is an author and speaker on embracing difference, and can be contacted at jenny@jennywoolsey.com or at www.jennywoolsey.com



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