My Special Students are not Sweethearts

I work with a lot of different people in disability services, so in turn I see a lot of different disabilities. I am interested in all of my work really, and try not to limit myself. But I never forget where it started, and continues to this day, with one day a week at Special School.

At Special School, in my particular classroom, I have students who have severe physical impairments but who also have brains much brighter than their bodies. I sometimes classify this as the cruelest turns of fate, to be in a body and you want it to work but you know it doesn't and it won't. It is different from Autism, which I heard beautifully put as 'seeing life through a different window, not understanding what you see, and nobody understands it either' (a generalization, but holds true for many people I know). It is different from intellectual impairment.

I know my students well. They are getting older, so I like to refer to them as my friends. They are all clever - much cleverer than people give them credit for. They can be lovely, but not always. They are teenagers and I remember my moodiness as a teenager all too well.

What I cannot stand is upon a minute of meeting them, someone who says "Oh bless them, what sweethearts!"

One of my students is, I'll give you that much. She is a sweetie, and she is often happy, and she is quick to smile and laugh. She is sweet. I'll even let you say she is a sweetheart.

But one of my other students that I can think of? Sweetheart is not the first word I would think to describe her. Bright, vivacious and bitter. I know her. She is currently limited as we unlock a key for an effective communication device, and this can make her angry. Would you call any other high-school aged student a "sweetheart" moments after meeting them?

One day, a friend of mine who is studying to be a social worker wrote this on Facebook

"It never ceases to amaze me how much people with disabilities despite all the discrimination they face on a daily basis are still some of the kindest and friendliest people I know."

That's coming from a social worker. A mass generalization on all people with disabilities.

I work with many different people. Guess what? I get bitten. I get spat on - purposefully, too. I am often covered with bodily fluids (nobody's fault). I get yelled at, by other carers. I try and stop self-injurious behaviours. I listen to a lot of squealing. I sometimes have to run a lot.

Sometimes I work with sweethearts. Sometimes I work with real cool cats. Sometimes I work with a mate or a buddy, and everything in between.

It's not glamorous. There is nothing romantic about this.

My Special Students are not Sweethearts, simply because they have a disability.
I've gotten it before too. I know my friend Emily from Words I Wheel By gets it too, as does her mum.

Any assumption about a person with a disability: that they will be sweethearts or not is a massive and unfair overgeneralization. We should be seeing a person before a disability. When we judge or assume that someone will be one way or another because of their disability, no matter what the disability, we are not being person-first.

And clearly, sometimes even social workers need a reminder on that.

The WHAT who invented the Upsee?

I am a huge fan of Leckey Products. It is one of my favourite companies for durable medical equipment (DME). I am a big fan of their standing frames. I am a massive supporter of the KidWalk, I think it is an exceptional product and just to clarify, I am not sponsored by Leckey. I also wouldn't recommend a Leckey product over one that would be more suited to a person's needs. But as it stands, I am a Leckey fan.

I became an even bigger supporter with the company Firefly, designed by Leckey. Firefly really hits the nail on the head for me because they create products designed to help involve children with disabilities in family life. It is all about inclusion.

When the GoTo Seat started making appearances on various blogs, I was in love. The idea of a lightweight, easy to pack seat for children who need assistance with posture is both mind-blowing and so obvious. It has been such a great invention for so many people.

Daniel using the GoTo Seat.

GoTo Seat

I was in love with the GoTo Seat and Firefly instantly, and when the Upsee started to make an appearance, I quickly grew interested. For a while there was hardly any information about it, just a small teaser. The teaser showed Debby Elnatan talking about her son, Rotem, who has cerebral palsy. She talked about how she wanted him to experience the sensation of walking and it briefly showed what she originally did - the crude (but excellent) design that turned into the Upsee as it is today.

Claire and Daniel Smyth; Louise and Bethany Watson; and Cameron and Charlotte Taylor using the Upsee

I waited online with a lot of my friends in this community, excited to see the reveal of the Upsee. It has now been produced, and it's excellent. The feedback has been largely very positive. I am a big fan. I have huge respect for Debby Elnatan.

So, imagine my shock when this photo started appearing:

What. The. Heck.

This photo hasn't just been shared and seen a few times: it has been viewed hundreds of thousands of times. I am furious. Credit to George Takei for correcting himself, but my fury still stands. This misinformation grates at me. All it took was a Google search and I found so many people who have been misinformed about who invented the Upsee, and also about Charlotte Taylor's disability.

Firstly, to Debby Elnatan. The woman who has made an incredible design, is getting ignored. Why? Is it because it's more emotional and adorable if a dad does this for his daughter? It is clearly better fodder for inspiration porn (another topic I could rant over).

There is only two ways I can see that this picture occurred...

1. Someone saw the photo of Cameron and Charlotte, briefly skimmed the article, threw together some assumptions, created this inaccurate picture and spread it like wildfire on the internet.

Or...

2. Someone created this picture, knowing full well that Debby is responsible for the creation but knew it would be soppier, mushier and more visually appealing with Daddy and Daughter, Cameron and Charlotte.

Cameron, Charlotte and the rest of the Taylor family are reportedly reaping the benefits of the Upsee and that makes me thrilled. She and her brother can play on the same level, and she can be part of family activities more readily. Charlotte, who is not paralyzed but has cerebral palsy, can experience the sensations of walking. This is what the Upsee was designed to do.

But, it wasn't designed by Cameron Taylor. It was designed by Debby Elnatan. Even in comments, when people read that it wasn't invented by him people say "so what? It's a great design". I get what they're saying, I do. But "so what?", "so give the person who created it the credit due her". Because, Ms Elnatan - well done. I am sorry you're not getting the credit you deserve. You have designed an exceptional product and you are changing the lives of so many children and family.

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When Political Correctness Turned Ugly

In Australia, I feel like the entire Special VS Inclusive Education issue seems to be less of an issue. I don't say that to sound at all "better than America" because I don't think that's true. We don't have special education classes within mainstream schools, so I think that is why it is less of an issue. You have mainstream classes (with additional support, if required) or you have special schools. You also always have the option to homeschool your child.

Shock horror: it is completely possible to fully support mainstream, inclusive education AND special schools at the same time. I definitely do. Every case is unique, and some children are going to benefit most from being in mainstream schools and some are going to benefit most from being in special schools. There are lots of factors that need to be considered, but having the option for both is something I consider very important.

I support them both, much in the same way I support mothers who breastfeed and/or bottle feed - as well as I support mother's who tube feed and use TPN! Sometimes, I see people get so hung up over the breast feeding VS bottle feeding issue and I simply think: shouldn't we a) be grateful that your child has a swallow reflex and muscles strong enough to take the breast or bottle and b) congratulations! you are giving your child nutrition! you are succeeding as mother! But I digress.

Recently, I got a very angry and very rushed email from one of my employers. It is from a vacation care that I work at, based at a special school and classed as a disability service. It is only for children with a disability. The email was sent to the entire staff and it was from the two supervisors.

They quit. They had been told their contracts may not be renewed.
It sounds like new people had come in and want to dissolve the vacation care program, and hand back the funding. They gave various reasons as to why, which I will tell you now and tell you every reason why I think those reasons are wrong:

"Services that only cater to children with a disability are not inclusive and will not be supported by the company"
1. This is the children's school, and it is their vacation care program. No other schools open their arms wide for children outside their school to attend their vacation care program, so how are those programs inclusive? We already accept children from other special schools as well as mainstream schools, with a diagnosed disability - so in many ways we are doing inclusive.
2. There are heaps of programs for adults with disabilities, heaps of services for them. This is one of the few times when adults with special needs probably get more available to them than children. Nobody ever accuses those services of not being inclusive. Children need these services too! They were created because the children need a high level of care that not average-Joe could provide to them, and parents need to work.

"Services for children with a disability which are based at special schools mean that children never leave that environment and won't be supported by the company"
1. In mainstream schools, children who go to before-school care, after-school care and vacation-care don't get this much concern. Why is suddenly an issue for the company?
2. You have no idea what we do in school. We go on a lot of excursions - definitely more than mainstream schools - we experience multiple environments, so don't you dare say that is the only environment they experience.
3. The children do go home on the weekends you know...
4. The children are in vacation care because they need to be. Their parents work. Not every child from the school is there at all, and rarely are the children in everyday of the week.
5. Some of the children come from different schools anyway, so they are experiencing a different environment.
6. We spend all our time during vacation care in the playground, gym and multi-purpose area, and area that we never get to spend enough time in during school time. We don't even go near the classrooms.

"Services for children with a disability which employ their teachers as staff mean that children never get to experience anything else and won't be supported by the company"
1. In our program, I was the only person who had anything to do with the special school who worked there. I am not a teacher, and I am only in school generally one day a week. There was only one student who I worked with on a regular basis. This student actively sought me out everyday, I was able to stop other workers one time when the student was in a situation they should not have been and if the student did not want to be with me, they had multiple other staff members to go and play with.
2. How awful for someone who knows your child very well to be working with them. What a shame that you feel safe and comfortable leaving your child at a service.
3. Again, we didn't even have any teachers at our program...
4. The chances of the child's specific teacher working there are probably quite slim. And then there are other children there too, so they will be busy with them.

The company has refused to have a forum with parents. I think my supervisors sent out this email to everyone to get them to rally with them.

My problem is: the children really have nowhere else to go. No mainstream school vacation will take them because a) they don't take kids from outside their own school, and b) they are not set up for it. It's not an issue of being inclusive, it's that they don't have a hoist or change tables or training or the staff ratio.
We have the facilities. We have the soft play rooms. We have the accessible playgrounds. We have the training.

What is the real problem???? TELL US.