Encouragement

The Opportunity of Adversity – Aimee Mullins

Aimee Mullins speaking at TED.

Aimee says it all, need I say more?

“Adversity isn’t an obstacle that we need to get around in order to resume living our life. It’s part of of our life.”

“Our responsibility is not simply shielding those we care for from adversity, but preparing them too meet it well.”

“There’s an important difference, and distinction, between the objective medical fact of my being and amputee, and the subjective societal opinion of whether or not I’m disabled.”

“We have to be careful that we don’t put the first brick in a wall that will actually disable somebody.”

“By not treating the wholeness of a person, by not acknowledging their potency, we are creating another ill on top of whatever natural struggle they might have. We are effectively grading someone’s worth to our community. So, we need to see through the pathology and into the range of human capability.”

“Adversity is just change that we haven’t adapted ourselves to yet.”

“No prognosis can account for how powerful (could be) the determinant of the quality of someone’s life.”

…And, as others have said…

“I think that the only true disability, is a crushed spirit.”

 

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.

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.

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!