Incapacity

Yes I’m Okay.

Guest post poem written by my daughter, Emma-Mae Schmidt. 1/9/2011.

 

Some may not think this,

but lots certainly might.

How do I get on with life,

without any sight?

So I think I’ll sum up,

in a fun kind of way,

exactly what is wrong,

with the sighted world today.

“How are you darl,”

you often say.

Wow, that conversation really made my day!

Please understand,

I’m not three years old.

Oh how many times,

do you have to be told?

You say I’m smart, amazing and clever,

blah blah blah,

yeah righto,

whatever.

But don’t you get it?

I’m just like you.

Every-day things aren’t that hard to do.

And every day,

or nearly every day.

“Are you okay?”

you often say.

Oh just how can I politely say,

yes I’m okay,

please go away.

 

And when you speak in that childish tone,

oh sometimes your heads are as hard as stone.

I want to shout “JUST LEAVE ME ALONE!!!”

How hard it is to speak in a patient tone.

You just assume it’s help I need,

no matter how I beg and plead.

You take me in your direction,

like a criminal arrested for inspection.

I tell you for the millionth time,

yes I’m fine.

And my body’s mine.

 

What is it? Are you half awake?

How long will all this learning take?

Just give it a break,

for goodness sake!

 

Please, I don’t need your sympathy.

It doesn’t matter that I can’t see.

You’re so thick and you irritate me,

sometimes I wonder,

if it’s you that can’t see.

 

Now the aim of this rave is not to offend,

no. It’s merely to warn you my friend.

My blindness I’d be happy to lend,

if it would make you comprehend.

You ask “how do I live without sight?”

I really don’t want to put up a fight.

So I’ve moaned and groaned the day away,

now it’s time to have your say.

“Are you okay?”

you often say.

Yes I’m okay,

well I am anyway…

But are you okay?

Equality and Equity

So, my last child just completed her last NAPLAN (National Assessment Program – Literacy and Numeracy). Whew, are we glad that’s over!

While I was on school council at one of our children’s schools (mainstream government school) I enquired as to whether there was any way of  obtaining comparative information from the NAPLAN for vision impaired students around the state and the country. The principal said that there wasn’t. My children were not obligated to complete the NAPLAN because they are blind, but that would be another difference between them and their peers; and a ‘testing’ environment experience they would not have been able to learn from. Over the years though, we have had one NAPLAN go ‘missing’ completely, one not assessed properly because some of the responses were not in the appropriate format (they were in braille, my child’s preferred format – and only possible one for mathematics, music or languages other than english, “LOTE”), and a third followed up by a very diligent teacher who recognised the assessment of my son as not reflecting what she knew to be his level of ability and achievement (again an issue with no provision for his braille submission’s appropriate assessment, I believe).

Much of what they are assessed on is visual, and the reflection on the Education Department is an implication of no interest or expectation that my children’s outcomes from being in the public system are of importance to the department or the future contribution (or lack-there-of) my children’s impact may have on society; including the contribution they may/will make to the retirement and end-of-life environment government ministers and educators will experience.

Equality and equity are both necessary. My understanding is that equality will give us all the same things; equity will make things fair, just. I realise that this is very difficult to accomplish, especially in an environment where we desire to meet the needs of all, and to do this justly and fairly for ALL is a mammoth task of time and resources.

I’m led to reflect in all of this on the differences between: public and private education, home and institutional education, integration in the mainstream and disability/health or giftedness/remedial-specific education, distance and face-to-face education. To be equitable, I believe all should be on offer, as standardising may be economically efficient but it denies individuality of person, circumstance, belief, value…and discourages the healthy social outcome of diversity and unity as opposed to conformity, and growth both personally and corporately from differences of relational interaction. Having said that, many of these growth opportunities can be frightening, time consuming, financially costly and will require a much more personal, intentional and discerning observation and assessment method. There are places where this is done, but they are few and far between and not readily accessed or publicised.

We expect to be able to choose our career, but circumstances may dictate what it will be. We expect to choose our place of habitation, but circumstances may dictate where it will be. We don’t always get what we expect, or prefer, or even require. But shouldn’t we develop the desire and willingness to try to offer equality and equity? I expect my children to live in a society that does not cater for them automatically, as is true now. They accommodate for the sighted world every day; they submit their school and university work in the teacher or lecturer’s preferred format (in primary school they produced a braille and print copy of nearly everything); they will have to expect that uncovered man-holes may not have been fenced off; they expect we sighted folk to get our left and right mixed up when directing (they do occasionally as well). I’m curious as to why those of us who comfortably live in the mainstream and rarely have to alter the way we prefer to ‘do things’, balk at the slightest suggestion that we accommodate for someone who accommodates for us every day of their lives. I’m not just talking about blindness or disability either! What about different cultures from our own, a perceived different status (I don’t like that word) from our own, someone from a different town or state, a different age group…the list could be endless.

If only we could all embrace the attitude of teachability, being malleable and willingly conscientious to consider another as I go about my day. It is possible, I see it happen. But not as often as I’d like, I guess. Offering a choice is a good start, instead of demand or guilt-ridden compliance.

Just a few thoughts.

Hello, Is Anyone There?

I’ve just listened to an interview on Open House with Dr. Christine Durham titled, Unlocking My Brain. Dr. Durham has an acquired brain injury as a result of a car accident, and talks about her recovery and experiences since her accident. She is clearly extremely diligent, insightful and in tune with herself and her surroundings, even amongst the confusion of brain injury and difficulty communicating. She completed her Master’s and a PHD after her accident!

A few things stood out for me as she described her experiences and journey thus far, and her altered but marvellous abilities and processes that have steered her toward such a magnificent level of recovery and insight. She mentioned more than once the shame she felt at not being “a proper person” and the all-encompassing pain not known or seen by outsiders, together with trying to find “Christine” (herself) either at home or at university or teaching at school.

Because she couldn’t communicate initially (and she nutted out her own forms of communication with half her tongue missing) things were done to her and expected of her without considering her pain may have been greater or different than another patient’s, or that she may not understand what was wrong with her brain, or that she was thinking and feeling things even when not communicating anything. It seems all but one doctor made Christine feel she had no hope. Her hope began to rise at her own accomplishments through her pain, ingenuity, and supportive husband, coupled with this one doctor who said she had the choice to learn independence or stay at home – acknowledging that whichever choice she made it was her’s to make. She sat in university lectures hearing gobbly-gook until something started to make sense. She returned to the classroom teaching without writing, guiding her students in other creative ways, and she began and completed a PHD on acquired brain injury profiting from the experiences of others along the way as well.

I’m not going to throw stones, because I can be guilty of assumption as much as the next person, but Christine’s negative experience seems to have been compounded, even exaggerated or extended due to presumption or transferring one’s own experience onto her as the patient rather than thinking outside the box in an endeavour to find out what her experiences and abilities might actually have been. If someone is reacting in a way that I would feel inappropriate for me, or even for them, perhaps I need first to consider as many of the possibilities as to why they may react this way. Possibilities that would never be true of me included.

When a child who might be classed as being on the autism spectrum is being “educated” in an open learning environment and is screaming and rocking or hitting from under a table, perhaps they are in excruciating pain and in sensory overload from the electric cooking equipment in one part of the building , the music in another, and reading aloud in another. As opposed to the presumed misbehaviour when compared to the teacher or another student. Perhaps the student who is blind is frustrated because they are constantly instructed to “learn to speak up” if not getting the teacher’s attention, when in fact other students don’t have to distract the teacher to get attention. Perhaps the person who has had a stroke would like to take longer to get to the next room independently rather than more quickly with someone pushing them in a wheelchair; they may also wish for you to sit and have a conversation with them that takes much of your time because you have to listen attentively and you both have to repeat yourselves, but they wish for you to know what they are thinking and feeling (or even that they do in fact think and feel).

Getting to know people takes time, lots of time. It requires letting go of assumptions, prejudices, insecurities and pride; and embracing vulnerability, humility, one’s own weaknesses, and an interest in someone else’s experiences, opinions, needs and desires. It’s a taxing thing, but much less of a destruction to one’s own soul than guarding, retaining, defending, justifying, focussing and absorption in one’s own familiarity without scrutiny and self-examination.

Oh to grow and learn every day I’m alive!

Ability, Intelligence, Education, Parenting

I have just watched a TED talk by Ken Robinson, Bring On The Learning Revolution.

I have heard many teachers say that they and parents are in partnership in educating our children. I’ve witnessed a much smaller number of them actually modelling their belief in and value of that statement. Another often-stated but not-as-often modelled belief or value is that we all (including each child) are individuals, and diverse.

Ken’s talk resonated with me for a number of reasons, as have many other groups and movements that are modelling the knowledge and understanding of whole-person and whole-community development; Mainly Music Men’s Shed’s and Kid’s Hope to name a few.

Observing what someone is interested in and then engaging with them where they are, and taking them further in their experiences (and consequently ourselves) is the best way to teach and to learn. Children learn this way in their early years at home so why do we change that method of learning, unless it is to achieve conformity or make the life of the educator easier. I am fully aware that educators are so busy already as are families, but could it be that this seems too difficult or time consuming because we view it as adding to our current method of formal education rather than a whole new way of thinking, educating and interacting; or perhaps a return to a less “intellectualised” but more holistically productive learning experience. As I’ve observed some families, and many of the educators of my children, I’ve witnessed their seeming astonishment that the children they wish to “educate” are inattentive, disengaged, even hostile.

What is it we value as productive? Achieving a particular person or groups goals for all, or encouraging each member of our families and communities to reach their own potential, within their own unique design, in the time it takes rather than in the time I’m willing to contribute to said potential? Guided learning is necessary, I learn from those who have been where I’m heading or fulfilled what I’m seeking to achieve. Although I will learn these things in relation to my unique design, experience, passion, age, culture, and…relationship to my educator.

I think that relationship also has a huge role to play in our learning. The best communicators develop a rapport with their audience, a positive relationship. I think that too many educators are fulfilling a task, achieving a goal, advancing a career; we learn from people we have a relationship with. Not necessarily the most intimate, but positive or rewarding in some way. The teachers that were the most engaging for me were the ones I felt connected to in some way, sometimes through humour, sometimes a connection outside of school, similar interests…The best teachers I have seen in my children’s classrooms are the ones who seem to understand or see into the personality of the child. This has included their tastes and family, fears and ease or difficulty with the school system – and they have adjusted, accommodated accordingly. This is possible, I have seen it happen spontaneously by some and I believe it can be taught and modelled and encouraged for others. But it will take quite a shift in thinking and a fairly large dose of empathy.

Ken Robinson mentioned the comment of a friend, “You know, a three year old is not half a six year old!” I would venture to say that a three year old is not another three year old known to you either. Nor is one boy or girl another boy or girl. Each sibling in a family is not the same as the others. And for those with a diagnosis of some kind, each is not the same as another…and each has their own potential to realise, as themselves. I will be advanced along my journey to reaching full potential too, as I walk alongside those I can encourage along their own journey. How fulfilling, holistic!

I’ll finish with a quote from Ken Robinson on TED:

 Human communities depend upon a diversity of talent, not a singular conception of ability. At the heart of our challenge is to reconstitute our understanding of ability and of intelligence.

 

For The Love Of A Child

When I said I’d love you always

When I said, no matter what

When I said I’d hold within my arms

Whoever I begot

Well, I meant all I was saying

Well, I meant every single word

Well, I meant in all sincerity

I’d adore my little bird

 

So, sing my little songbird

So, sing in your own way

So, sing with voice, or print, or hand

Sing while you are at play

You speak in different tones sometimes

You speak without a sound

You speak from deep within your soul

Like no other I have found

 

Though they see incapacity

Though they see a misfit

Though they see their life hindered

I see my life on fire; lit

New vision now have I

New vision now could they

New vision now could all embrace

Oh try, now, while you may

 

 

4/5/2014