Attitude

Adversity, What’s yours?

My middle and third children have a friend who has included a quote with her photo online. The quote is by Neil Marcus…

Disability is not a brave struggle or courage in the face of adversity. Disability is an art.

Now, I’ve not yet met a person who has a ‘disability’ and loves to be told that they’re amazing or brave or special or beautiful or clever or…because they can’t do some of the things someone else can. I am a parent who doesn’t really get much of a boost from being told I’m great at it just because I happen to have children who can’t see, especially by strangers. Having said that, if a person who has lived with me in some form of close relationship and/or observed my parenting as it occurs, and then says that it’s great, I may be a little chuffed. My children, likewise, will be encouraged by acknowledgement of their work and achievements; but if all the speaker knows of them is that they exist but can’t see…not much to be enraptured with there.

My children don’t see being blind as an adversity. I don’t see having children who are blind as being an adversity. In my case of course, it was not what I had imagined or knew much about, but my children have never known any different. So, what is adversity? My dictionary search suggests that the origins of the word (from French and Latin) meant to turn towards, be opposite (adverse) and the like. Being a person who can’t see or having children who can’t see isn’t adverse to us, opposing us, turning towards us; it is how we are, how it is, the direction we are travelling already.

So, what is our/my adversity?

I remember some years ago talking to a friend who gets around in a wheelchair. I was discussing with her the fact that the hazard and directional tiles that are installed to encourage independent travel (and possibly more safe travel) for those who are blind are often not placed correctly as those installing them don’t realise there is a particular way they are used, and don’t seek to be informed. During the course of the conversation though, she mentioned that they are often a risk to her as she can be thrown from her chair as she travels over them (like corrugation on a gravel road, I imagine!). I was sharing my new learning about her sometime-experience-in-life when child number one mentioned that the phone boxes installed to encourage independent use of a public phone for chair users can be a hazard for those who use a cane, as they don’t reach the ground where the tip is (bump of head, shoulder, face). What do I see in these things? Environmental and societal adversity or disability.

Similar adversity occurs in the school ground, within the education ‘system’ (teaching method, delivery, reception and learning difference, work production, submission method etc.); in the health and medical environment; in the myriad sporting genres. I guess I needn’t go on.

In all honesty, my adversity is those who see me as their adversity! And I am the adversity that someone else faces.

Realising who we are averse to and who is averse to us, or realising what is adverse to us or another is not enough though. If, in adversity, we (person, family, culture, environment, system…) only recognise that we are in a ‘face-off’, we may do battle; we may control/conform; we may add programs, equipment, beliefs etc. to others, compounding responsibility and requirements. Alternatively, if after recognising that we’re facing adversity we communicate our desires and needs and goals and experience and expertise each with the other, perhaps we can unlock a new pathway we walk together, facing the same direction. Not turned toward each other in opposition, but together turned toward a common goal, destination; an agreed path; by a new or negotiated and amalgamated system.

I think that I’m not opposed to adversity, mine or yours (but I don’t like it!). I am opposed to remaining averse to each other on all things. If we must walk or desire to walk together, we will most likely need a new mode of walking and possibly a new route or even goal to walk along and towards. Continuing along our familiar but separate paths, in our familiar but separate ways, attempting to impose these ways and paths onto those we are averse to will exacerbate not relieve adversity.

We each have adversities in life. Perhaps the question is not what they are so much as what will I do when they are revealed. Am I a heel-digger or a malleable, teachable listener and adapter and path-turner? Independently individualistic or a community-minded team player.

Permanent and persistent adversity may not live well in community, but it can be a trigger for turning towards it.

 

Today

The sun came up today and…

Showers fell around and…

Children ate their meals and…

They’re tucked in bed just now.

 

Today we all stayed dry and…

Today we all are warm and…

Today we all kept company and…

Not all alone and scorned.

 

I thought, today, that I had needs and…

Desires, today, which must be filled and…

How, today, might show a spotless house and…

Today, I and family, appear as billed.

 

But, today, we’re fed and watered and…

Today, have family and home and…

We’ve air to breathe, plans to conceive and…

Heart and mind and soul.

 

I may not be whom I imagined and…

Life may not be as I had prayed and…

I may wish for something different but…

I am who I am TODAY.

 

 

 

 

Positive Educational Experiences

So, thought I would share some of the positive experiences we have had with the formal education of our children. From local school, education department, and/or blind-specific educators and instructors. Not all-encompassing by any means, but a taste of some of the good stuff.

When child number one began life in formal education, the school accessed funding and attended to every recommendation of the Orientation and Mobility Instructor in regard to making sure the grounds of the school were reasonably suitable and safe (to the best of my knowledge).

When child number two began school, the teacher approached a local group and spoke to them in request of funds to make up a short-fall enabling the purchase of a particular piece of equipment; mentioning that for our children to share in one of these pieces of equipment was the equivalent of asking sighted siblings to share one pencil. Brilliant.

Child number three had a role in the last school production before heading to secondary school. The staff worked with this child to ensure that this one would be able to enter and exit the stage independently throughout the show. So well was this accomplished, that another member of the local community commented to someone that they had thought there was a blind student in the play, which one?

When child number one began secondary school and the art class were drawing around their shoes/feet, the teacher had prepared for our child to wrap wire around this one’s foot making a sculpture of it. This staff member also sought out and purchased equipment that would enable safe but more independent use of some equipment (bringing grateful tears to my eyes at my first parent/teacher interview).

A secondary school teacher sought out equipment that would make for a smoother road in the production of the curriculum in our children’s preferred format. Another secondary school teacher automatically produced comments on corrected work in a format independently accessible to our eldest (eliminating the need to rely on an aide or parent to read them), without being asked. One teacher also sought input from another teacher, who had previously taught our children, for ideas – without being instructed to.

We have had instructors and teachers from ‘blindness agencies’ go out of their way to serve our family. Working at providing time with male instructors in a female-dominated environment. Sacrificing time to, not equal but, provide somewhat more time than we had been receiving as ‘country/rural clients’. Phone instruction for our children and debriefing for me, the parent, on occasion. Time for conversation and incidental learning for me as a parent, and the validation of seeking my input into the services provided.

There is much to be thankful for, and which has been appreciated by our family. No one and no system is perfect (which may be reflected on in the near future also). But imperfections and mishaps, though they need to be addressed, do not take away from times of great provision, consideration and even excelling.

I am indeed grateful.

 

This, Too, Is Ok…

One of my children had a favourite type of toy; a series of multiple sized plastic fish, in a scoop shape so that they stacked together. These ‘fish’ went everywhere. They were the best kind of favourite or security toy as they were able to be washed regularly throughout the day – in the bath, in the sink. Whenever washing of the child took place, so did washing of the fish. Although the washing had to be taught as part of the bathing etc. process, it was not automatic. As I said, the fish went everywhere. Learning to climb the ladder of the slide was done, fish in hand. Swinging was done, fish in hand. The fish went to kindergarten, to church (and tapped out the rhythm of the songs), weddings…everywhere.

It turned out, that the ‘scoop’ shape was a large part of the attraction. As the scoops from the ground coffee made their way into the toy collection, they became favourites as well. As did the washed scoops from the laundry detergent, and eventually we moved on to egg shells. Not plastic, real out-of-the-bum-of-a-chook egg shells. Every time I/we cooked with eggs, the most complete halves of the shells were washed and left on the window sill to dry. As one shell broke, it was replaced with another from the window sill. Eventually, vegetable peelings were the go, and as this one would fall asleep in the car the peelings would collect beside and behind car seats and on the floor.

Though none of these things were a bother to me in themselves (as my son with hair clips and nail polish were not, nor my girls wearing tiaras and wings to church or weddings, and one with band-aids on clothes), I was concerned that some learning was actually hindered by the constant presence of something in the hand, about an obsessive attachment to the objects themselves (which was in the nature of the child in question) and perhaps a few other considerations. So we embarked on a progressive process of experience and detachment.

One step we walked through was to leave the fish in one’s bag at kindergarten, and take them out again for the trip home. Once we got to egg shells, this particular child was part of the cleaning process (though probably only once in a while, I did most of this). We then began to use whole eggs to play with in a bowl. We would practice cracking them open into the bowl with, hopefully, two whole halves. Then my child was allowed to ‘play’ with it all, swishing hands in the raw egg, stirring etc. Once the play was completed, to end the experience the shell was crushed and stirred in as part of the fun. The shell was then known to have been destroyed and told that it could not be repaired. The shells on the sill were still available for a time while this play continued. Eventually I told this child how many shells were left on the window sill, and that once they had all been broken I would not be leaving any more up there. They were counted down as we went through them, giving fair, advanced notice of the time/day when they would no longer be available. The plastic toys were still available until the child grew out of the desire for them, as children usually do throughout their development.

This all happened over some years. It was not accomplished in a week, or a month. It was not begun because I, or someone else, was uncomfortable or embarrassed with this child’s preferred method or objects of play. It was not attended to so that this child would conform and be like any other child (or, heaven forbid, any adult). We took this child’s personality and temperament, age and interests, foreseeable future needs and potential desires into account. Then thought outside of the square, while looking into the child and our own family life.

And the result…a practically grown, independent, well-adjusted young adult – who just doesn’t happen to be able to see.

Don’t fret, be creative and imaginative… this, too, is ok.

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.

Response or Respect

Guest post by my daughter!

This morning I went to the office to sign the private study sheet (a compulsory thing for VCE students when they have free periods). As I approached the office, I noticed that a teacher was there sorting something out with the office lady. So, treating this as a waiting in line kind of situation, I waited for her to finish. She then said to me: “Are you right?” I said: “I’m just here to sign the private study thing”. She responded: “Well, ask – don’t just stand there”, to which I replied (as gently and politely as I could, but perhaps somewhat indignantly): “I was waiting for you”. (No response).
Response or respect?
I believe that being assertive is important – but when one knows that someone ahead of them is speaking/dealing with somebody it is common courtesy to wait, is it not?
I do not post this (to treat it) like a diary, I also realise that this may seem a vague and perhaps generally boring point of discussion, but I think that the request to “speak up” is commonly said to people with disabilities, in circumstances where we would expect any other person to wait; be polite etc. So I would be interested in people’s thoughts (I’ve written a number of essays in the last fortnight and I think it’s about time someone else had a go!)
“Assertiveness is important, but respect is more so.” Discuss.