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Can I read?

By Granny - 17 September 2008 38

My daughter 'Violet'Most people would be familiar with the story of Helen Keller. Blind and deaf, she defied the odds to make history when she was awarded a Bachelor of Arts degree from Radcliffe College, which was the closest a woman could get to Harvard in those days. She went on to make more contributions to the society of her day than most people without a disability will achieve in a lifetime. These achievements were possible because one woman believed in her enough to persevere in breaking down the barriers to communication.

Without communication, learning is simply not possible.

‘Violet’ has been at a public school in the ACT for six years. She is now in Yr 3.

Can Violet read?

Nobody knows.

Violet suffers from a debilitating genetic condition. She can’t speak and she can’t sign. She can’t even point. Does this mean she can’t learn?

Deakin University graduate, Anne McDonald, whose powerful story was told in the 1984 Australian film “Annie’s Coming Out”, says of the right to communicate:

‘For people without speech, talking is often dependent on the generosity of others, either in providing interpretation or facilitation or in giving up time to listen. While this is inevitable, there needs to be an irreducible right to make one’s opinions known on issues concerning your future well-being. At the moment social conversation and medical consent are equal in the sight of the law, both depending on the accidental availability of communication partners with the necessary skills and commitment.

‘There is no right to be heard. There is no right to an interpreter. There is no obligation to listen.

‘While social interactions are always dependent on the politeness and tolerance of individuals, it should be possible to legislate for a right to communicate in formal situations such as courts, hospitals and schools. Without such legally enforceable rights, people without speech will be at the mercy of decision-makers who can arbitrarily decide to disallow communication.

‘Communication falls into the same category as food, drink and shelter – it is essential for life, and without it life becomes worthless.’

The Right to Communicate
Anne McDonald

In her shocking exposition on St Nicholas Hospital Fourteen Years in an Institution Anne describes herself as ‘a severely handicapped athetoid,’ and states, “The combination of these difficulties meant that I could not use my hands, walk, or talk intelligibly.” Like many children without speech, Anne was considered to be mentally retarded; and even diagnosed as such.

It is not that we do not have the technology to enable Violet, and children like her, to communicate. It is that, for all practical purposes, our special schools and therapists here in the ACT do not have access to it. The therapists have no idea when Violet may be even able to trial an appropriate communication device, and doubt whether one will be available before the end of the year.

Meanwhile Violet has only three years of primary school education left, and is slipping further and further behind her peers.

Furthermore, each child in Violet’s high support class must wait to take turns because all need assistance to perform any sort of learning activity. With six children in the class, at times Violet can be waiting 50 minutes for a 10 minute turn. This means that in a six hour school day, she may only have an hour available to really learn something on her individual program.

Yet if she were in a mainstream setting she would have her own support person allocated to enable her to learn one on one. The mainstream setting is unlikely to be appropriate for Violet for various reasons, but why should she be discriminated against in terms of such an essential resource?

So instead of learning her ABCs and 123s, Violet has been studying assisted finger painting and excursions to the local Kippax shops. All very nice, but does it really constitute a quality education?

The teachers and therapists do the best with the woefully inadequate resources that they have. I have never met such a fine group of people as those who work within the special needs community.

For Violet, however, literacy is not going to be ‘just another nice thing to have’ but a core life skill she will need to communicate adequately with the world around her: to have any independence or human dignity.

Frankly, I have to wonder what proportion of children graduate from the special education system in the ACT with even a Yr 6 standard of literacy or numeracy.

If Helen Keller attended Violet’s school today, would she be just another student with behavioural issues doing assisted finger painting in the senior building?


What’s Your opinion?

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38 Responses to
Can I read?
Fiona 8:35 pm 17 Sep 08

I’m a part of the “system” one of the therapists. lol.

Fiona 8:34 pm 17 Sep 08

Granny, I wouldn’t mind chatting to you about a few things on there… but alas should not do it on here! is my email.

There are of course issues around goals for the students. The goals around community access may be around basic communication skills, such as listening to the teacher, recognising sight words or labels on things, handling money, making requests, even if it is by exchanging money without eye contact. Finger painting may be a fine motor activity, working in some way towards strengthening the fingers r improving coordination in a kind of pre-literacy acitivity. Copying patterns is essentiaal in copying letters.

Just a few things 🙂

Not that it’s wrong to havea goal of literacy, and assistive tech is certainly to way to go for many of these children. AGOSCI conference is coming in 2009 – Australian group on severe communication impairment. Hopefully this will do something to highlight the needs of these kids! (and adults!!)

Granny 8:31 pm 17 Sep 08

But of course! I will be there with bells on!!

I noticed we both posted the same information, which is great!

There are so many issues I would like to raise with the candidates. This is really just the tip of the iceberg. It will be interesting to hear what sort of understanding, if any, they have of the issues that parents, carers and educators face; and whether they have given any thought to policies and strategies that will address some of these issues.

Frankly, I think a lot of parents are fed up with the system. Even having a child see a therapist can be a difficult feat judging from what some of my friends have told me, particularly when a child reaches high school or college.

If you don’t mind me asking, do you have a child with special needs in the ACT system?

Fiona 8:21 pm 17 Sep 08

Going to the forum tomorrow night at Dickson college?

Heavs 7:05 pm 17 Sep 08

How did Helen Keller’ parents punish her when she was bad?

Moved the furniture.

Granny 6:55 pm 17 Sep 08

Only if they hitch-hiked with ‘Please’ signs attached to their thumbs.


Bit embarrassing that my humanity is showing though, someone should have told me! Oh, someone did ….

: )

Bundybear 6:46 pm 17 Sep 08

Yeah, nice try Granny, I love to read your humorous contributions, but your humanity is showing on this one. Besides, if you had a hoon car you’d just offer people lifts.

Granny 6:29 pm 17 Sep 08

I’ll be even meaner once I get my hoon car, Bundy!

; )

Bundybear 6:22 pm 17 Sep 08

Granny, I sense the birth of your sweet girl has planted in you the seed of a very powerful advocate, and likely a very effective one too judging by your interactions on this site. The very best of luck with your endeavours in this area. People without a voice do still need people to speak on their behalf, but at least one of them will have a reliable and trustworthy one.
Look out bureaucrats, naysayers, blockers of any type,…….here comes GRANNY!!!!!

LlamaFrog 6:12 pm 17 Sep 08

meh, public schools no kid should have to go to one.

Granny 5:49 pm 17 Sep 08

Well, what we do know from very exciting mouse trials recently is that when a mouse who has had the MECP2 blocked, thereby inducing Rett Syndrome, even after growing to adulthood in that condition if the block is removed the mouse will become completely normal within a matter of months with no residual effect from the Rett Syndrome whatsoever. This was a completely unexpected result by the scientists conducting the research, and has astounding implications for our ‘Rett angels’. There is actually a very real possibility of a cure.

We are very fortunate in that this is considered to be a ‘sexy’ research area, and we get a lot of funding (relatively) and a lot of interest from the scientific community, also because there is a theory that some of the research in this area could unlock autism.

The gene responsible for the condition was only discovered in 1999, the year our daughter was born, and the rate of progress since then has been mindblowing.

Mr Granny explained it to me as being like a car with no petrol, and if you just fill the tank the car will go. So there is probably nothing wrong with her ‘engine’ so to speak.

Also, she appears to me to have a high understanding of what we say – especially humour. The fact that she laughs at appropriate points in the conversation or tv show indicate to me that there is nothing wrong with her reception only her transmission.

But all that is beside the point really. I’m not just talking about children with this condition, I am talking about children with any condition that renders them incapable of spoken communication.

Children without disabilities in other areas can use a range of strategies such as signing or PECs. However, more severely disabled children will probably require access that is more technologically based.

Without the necessary equipment they have no voice – in life, not just in learning.

However, I passionately believe that every Australian child should be entitled to a quality education. Surely that is the premise on which public education itself is based?

Mainstreaming is where children with a disability attend a regular school. This may require assistance with feeding, toileting, pushing wheelchairs, lifting, dressing and undressing such as for swimming or fancy dress costumes, or hand over hand assistance to participate in certain activities … such as finger painting in Yr 3.

Sands 5:15 pm 17 Sep 08

I guess with the mainstream schools, there’s an obvious/apparent return on investment (or not). You say you don’t know if children with this type of disability can learn. So let’s say she can’t learn – or has no use for numbers or to know where to put a full stop or comma. Why bore her with those sorts of lessons? Why not just take her to the park and educate her in a world sense? And expression through art (in Violet’s case – fingerpainting) is a very meaningful way to communicate.

When you say mainstream, do you mean for children without a disability? If so, I’m not so sure there’s a one-on-one situation happening there either. That was called tutoring in my day – and a very high additional expense.

Granny 5:04 pm 17 Sep 08

Thanks, jessieduck! Unfortunately the communication issue does impact on every area of life. When she was small she could pick out her name at Gymbaroo, and I used to show her flashcards and write stories about her.

But think of it like this: it’s a bit like having a refugee from Africa come into the classroom. Well the teacher doesn’t speak African and there isn’t an interpreter. So unless the communication divide can be bridged, how can the teacher teach this child and how can the student learn?

jessieduck 4:53 pm 17 Sep 08

That was beautifully written and raises some food for thought.

I will add that eductaion doesn’t start and stop with the school bell- I hope that the hunger to learn is being fueled at home as well.

realityskin 4:49 pm 17 Sep 08


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