Empathy

Adaptation

There’s a lot to read about adapting, redesigning, modifying and adjusting at the moment. This is the age of COVID-19!

Governments, schools, churches, businesses, artists, support and aid agencies, individuals and families, and of course health facilities and workers – physical, psychological, emotional.

One article I’ve just read was how Paralympians and their families are using their imaginations to keep training consistent for best results at the next games.

I found myself thinking that they’d be ahead of the ‘game’ though, as they’ve been adjusting and adapting for some time already. As have all of us who are not mainstream, or of groups/peoples who are least valued by the mainstream.

My adult children have lived their lives being blind, but because that is true of them since birth, it has not been a loss or adjustment for them – only everybody around them who is sighted.

Their life and mine, though, has been one of adjusting, modifying, redesigning and adapting to the mainstream, the larger group who resist any life other than the way it suits them. Now this preference for ‘life done my way’ is not unique to a few or a particular group, it is common to all including me (and my children). But a small few, either choose or are thrust into a new version of life where making accommodations is required.

The difference in this ‘age of COVID-19’, is that those who get by with minimal adaptation and modification are now the few.

And those who are already living lives of modifying, adjusting, adapting and redesigning have more of the like added to their load-bearing.

Some of the technology and systems main streamers are now using, the adjusters and modifiers have been using a long time. So, we’re waiting for you to learn to use it in the way we need to.

Some of us living a life of redesign and modification are further isolated by the technology and systems which the new mainstream finds connective.

Families who have already modified and redesigned their life/work/health balance to fit the mainstream’s order, are having to do this again – with parents, partners, children and grandchildren. Families who had different, demanding, changeable, unpredictable days before the ‘age of COVID-19’, will still live this once it passes and continue to live this on top of the current global changes.

My hope is that this generation will remember to consider who will be excluded, forgotten, disadvantaged or isolated by our choices and preferences moving forward and out of this crisis.

That we will not forget, that some of our crises within the overarching crisis of the virus, were born out of our unwittingness or unwillingness to consider those who are not ‘us’.

That we will learn and practice empathy, and the common thread which is our humanness.

That we will talk with each other, and future generations, about who and what we were before and during the ‘age of COVID-19′; who and what we are working toward being past the age of…’.

Coaching the Blind

People who use their eyes to receive information about the world are called sighted people or “people who are sighted.”

Sighted people enjoy rich full lives, working, playing and raising families. They run businesses, hold public office and teach your children!

 

HOW DO SIGHTED PEOPLE GET AROUND?!

People who are sighted may walk or ride public transportation, but most choose to travel long distances by operating their own motor vehicles. They have gone through many hours of training to learn the “rules of the road” in order to further their independence. Once that road to freedom has been mastered, sighted people earn a legal classification and a “Driver’s License” which allows them to operate a private vehicle safely and independently.

 

HOW TO ASSIST A SIGHTED PERSON

Sighted people are accustomed to viewing the world in visual terms. This means that in many situations, they will not be able to communicate orally and may resort to pointing or other gesturing. Subtle facial expressions may also be used to convey feelings in social situations. Calmly alert the sighted person to his surroundings by speaking slowly, in a normal tone of voice.

Questions directed at the sighted person help focus attention back on the verbal rather than visual communication.

At times, sighted people may need help finding things, especially when operating a motor vehicle. Your advance knowledge of routes and landmarks, particularly bumps in the road, turns and traffic lights, will assist the “driver” in finding the way quickly and easily. Your knowledge of building layouts can also assist the sighted person in navigating complex shopping malls and offices. Sighted people tend to be very proud and will not ask directly for assistance. Be gentle yet firm.

 

HOW DO SIGHTED PEOPLE USE COMPUTERS?!

The person who is sighted relies exclusively on visual information. His or her attention span fades quickly when reading long texts. Computer information is presented in a “Graphical User Interface” or GUI.

Coordination of hands and eyes is often a problem for sighted people, so the computer mouse, a handy device that slides along the desktop, saves confusing keystrokes. With one button, the sighted person can move around his or her computer screen quickly and easily. People who are sighted are not accustomed to synthetic speech and may have great difficulty understanding even the clearest synthesizer. Be patient and prepared to explain many times how your computer equipment works.

 

HOW DO SIGHTED PEOPLE READ?!

Sighted people read through a system called “Print.” This is a series of images drawn in a two dimensional plain. People who are sighted generally have a poorly developed sense of touch. Braille is completely foreign to the sighted person and he or she will take longer to learn the code and be severely limited by his or her existing visual senses. Sighted people cannot function well in low lighting conditions and are generally completely helpless in total darkness. Their homes are usually very brightly lit at great expense, as are businesses that cater to the sighted consumer.

 

HOW CAN I SUPPORT A SIGHTED PERSON?!

People who are sighted do not want your charity. They want to live, work and play along with you. The best thing you can do to support sighted people in your community is to open yourself to their world. These people are vital contributing members to society. Take a sighted person to lunch today!

Be nice to them, some of my best friends are sighted people.

Author unknown.

 

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.

 

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 the ‘Open House’ podcast 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.

 

Looking Back

As I think back over the journey of having children who happen to be blind, I see so much that I would never have known or experienced without them.

Yes, the obvious of parenting; the marvel of new life, dependance, sleeplessness, responsibility…But so much more!

How the body works; theirs, mine, other children’s and their family members we’ve met. How the body works differently when genes or brains or – whatever – don’t operate as they were designed to. How differently bodies and minds and emotions and souls and families work, for recognised and unrecognised reasons. So many varied ways to overcome obstacles – our own or culture’s; physical, emotional, attitudinal. The dreaded P word (perseverance, ugh!), patience, wonder, ‘aha’ moments, creative thinking, someone else’s creative thinking, the excitement and frustration of difference…Oh my, and so much more!

I would most like to mention just now a phrase I learned, used by some Early Childhood Educators who worked with our children, “We do a lot of sitting on our hands!” Hand-sitting. I have found that hand-sitting is a good principal to follow in many of our relationships, not just in teaching children with a vision impairment a new concept or activity. I must confess right off that this is a struggle for me also, especially when I’m weary or stressed or in unfamiliar surroundings. The desire or need to be ‘hands on’ sometimes seems overwhelming, but it is not.

If the child (or in fact adult) who is blind does not experience for themselves, they rarely if ever learn what is being taught. Once they have concrete experiential knowledge, learning in theory may take place, but there must be a foundation of experiential learning for the mind to develop new learning from. Now, this is true of everybody, but the individual who is blind (particularly a child in the company of an authority figure) often has their opportunities for  independent experience taken from them. Guided learning is necessary, important and valuable, unfortunately we too often do an activity for rather than guide through.

As I have said, I still do not do this every time. So valuable, even imperative, is it to guide through, that I am at the very least frustrated with myself whenever I have neglected to be attentive to do so. I have heard of some adults describing hand-over-hand coaction as being similar to covering the eyes of someone with sight while expecting them to see. My children have gained little to no information from something while coaction is occurring. This can be very difficult for a parent or teacher, or therapist to conceive of, especially when we consider that it is an acceptable practice when working with many other types of difference. I believe, though, that we often use this principal in other places where it would be more productive for, and less offensive to, those with whom we are seeking to be of benefit if we guided in less intrusive ways. Learning to be more descriptive is of inestimable value, just as the use of pictorial guidance has been enlightening, less intrusive and effective for many of those on the Autism Spectrum and people alongside them.

Alongside! Mick and Ruby Duncan from New Zealand live a life of serving others which they call “Alongsiders”. If we’re going to do a lot of “hand sitting”, I think we will also be doing a lot of “along siding” and both inhibit the problem of intruding. Physically, emotionally, socially, mentally; intruding is not only offensive to those we intrude upon but counterproductive to any kind of independence, interdependence, maturity, individuality or self-actualisation we are seeking to encourage. It will take some self-control. It will take some empathy. It will take some soul and attitudinal searching of ourselves. But the personal benefits are also incredible! Less pressure, on us and those we’re working or living with. Less tension in relationships. Less frustration when our own ways are not adopted. And those we love, serve, teach and care for will want us alongside them. And they will become who they were  designed to be and interact with the world as they were designed to interact with it, and us.

I am not advocating that we leave ourselves and others as we are. I believe we thrive when we grow and learn, and I believe we need to learn things that we are not familiar or comfortable with and are sometimes afraid of. But how we learn and teach is important. Understanding how someone learns is imperative for beneficial, productive teaching. Parents, families, teachers, therapists, lecturers, doctors, nurses, others…lets first understand how we learn and love, then try to understand how others learn and love…then lets learn and love together!