Communicate

I Choose…

I Choose

I choose to be seen, heard, accepted, loved and chosen…I commit to do the same (coloured words, written on black background)

So, International Women’s Day has been and gone. Lots of articles and videos on great women leaders, carers, adventurers and survivors – which I didn’t read. Of the myriad offerings, I watched one video and read one article on domestic violence. I have a very few observations to share from that which I have either witnessed or experienced:

1. I agree with those who tell us that emotional, verbal, psychological and spiritual abuse, are abuse. Also that one or all of the above are pre-cursors to physical and sexual abuse.

2. I agree with health care professionals, researchers and survivors that violence of any kind, including those above which you may think aren’t really violence, escalates without intervention and doesn’t ever get better by itself. (For Christians reading this, a ‘God moment’ is intervention…by God!)

3. Domestic violence isn’t just from spouses (of whatever genre you have) or parents of children and teens. Extended family, their friends and parents of adults abuse too, that includes emotional and verbal.

4. Both spouses can be abusing each other, including physically – and both are abusers, and both are victims. Look up co-dependancy.

5. Emotional and psychological abuse of woman over man, is abuse.

And finally a few insights from Brene BrownDaring Greatly – How the courage to be vulnerable transforms the way we live, love, parent and lead.

When shame becomes a management style, engagement dies.

Vulnerability is based on mutuality and requires boundaries and trust.

Vulnerability is about sharing our feelings and our experiences with people who have earned the right to hear them.

Vulnerability without boundaries leads to disconnection, distrust and disengagement.

We need to feel trust to be vulnerable and we need to be vulnerable in order to trust.

The result of this mutually respectful vulnerability is increased connection, trust, and engagement.

Thanks for your time.

 

The Family’s Experience – For the Educator and Professional

Paper presented at SPEVI 2015

Gina Schmidt

 

 

Smidkids

 

Reading of  “The Seed”

 

Today I have two observations I’d like to highlight.

Perhaps more by way of reminder than anything else, or maybe things you hadn’t considered yet.

 

Both observations I’d like to share relate to our tendency to forget, or at least relegate to the back blocks of our mind the understanding we may already have of our diversity, individuality and uniqueness – both personally, as families, cultures, and communities.

 

One of the most precious, and most threatening aspects of the family’s experience can be the medical and educational professionals’ involvement in our lives.

Sometimes the diagnosis you give, or the therapy you prescribe, or the new way of modeling and teaching you offer is the greatest relief, or hope, or validation for us.

Other times, these things cast us off into grief, or despair, guilt and/or isolation. Hopefully our journey involves some experience of all of these things, which would be considered ‘normal’.

From now on, you are part of our lives and our families. We may come to your office, but often you enter our homes. You observe us as we interact, play, eat, walk, read, cook…I could go on. Because our interactions are connected with many intimacies, as well as general functions of life, we may become close.

Alternatively, we may feel you’re more a part of our family than you do. Or you may feel more a part of our family than we feel you are.

We need to help each other understand what the nature of our relationship needs to be.

We need you to remember that we are a family, as you have your own family. Sometimes we need you to remind us that you contribute to our family, but we are unique and will determine our own family’s path.

 

 

I have experienced both. A very close and personal relationship with professionals built over time and three children. Also the intrusion of some; presuming positions and responsibilities within our family which were not offered, nor welcome, nor helpful.

The latter can be confusing for our children and blur the lines between roles and to whom our children are accountable. The former can be a beautiful collaboration of security, fostering growth and confidence in families – also a tangible illustration of the popular African proverb, “It takes a village to raise a child.”

 

 

My second observation is something we usually associate with those outside of the disability or, specifically this week, the vision impairment community.

 

We all hold to particular biases or preferences. Some biases are unhealthy because they are hurtful and damaging to someone else or ourselves. They may stem from false assumptions as opposed to being informed. Others though, are differences because each of us is unique, and each of our families, cultures and communities are unique.

There are choices we can make in relation to developing our young people or in maintaining the life choice of an adult with a vision impairment, and they are just that – choices.

Choices about the medical procedures we will, or will not embrace.

Choices about learning grade 1 or 2 Braille first off.

Choices about handling reactions to sensory stimulation, or lack thereof.

…toilet training, private or public schools, which piece or brand of technology best suits, city or country…

The list is endless!

I’ve learned that you all have your preferences, as do I. As does each individual, family and professional here.

Helping us to be informed but not overloaded would be the greatest gift of service you could offer us. Perhaps let us know the options, maybe another we can ask. Then help us follow up on the thing that interests us most. You never know, we may end up with the same preferences as you.

 

I’ve noticed that smaller communities are often a reflection of the broader community or culture, but the smaller may influence and therefore be reflected in the broader instead.

Looking forward to our little community being a positive influence in the broader community at large.

 

Let me finish by reading the end of the story, “The Seed,” to you again.

 

…As each one stepped back, and observed the tender plant, they were able to recognize what its needs might be. In turn they also enquired each of the other, to learn from observations they may not have recognized, or had prior knowledge of, to have even been considered.

Most importantly…

…as a team in constant communication , those employed for service to the growth of the new plant – in fact to service of the plant itself – began to listen for, and hear what the little plant was telling them. They heard and could see when the plant needed moisture, or sunlight, or protection, or space; because they were attending to the needs of the seed, instead of what they wanted to give or to do.

 

The little plant grew tall, and strong, and was borne of new seed, so that more plants could grow, providing clean air, and beauty to enjoy.

 

The workers and the sower lived with much joy, and with a profound, and unfathomable sense of accomplishment, as they witnessed the growth, and maturity, and provision, and beauty of the little seed, which became great.

 

 

International Day Of People With A Disability

Please

Please don’t make uninformed assumptions about my needs or requirements.

My peers and I will learn prejudice from good-intentioned ignorance.

 

Please don’t demand my independence without teaching it.

My peers and I will learn dis-ability.

 

Please don’t demand I ask for or receive help at your demand.

My peers and I will learn that I’ve no right to my own life and choices.

 

Please don’t decide my contribution based on your time constraints, energy level, prejudices, fears, and assumptions.

My peers and I will learn my only right is to live by another’s leave.

 

Please don’t decide what provision you can offer me after the funding’s been spent on everyone else’s needs first.

My peers and I will learn that my needs are wants, and not necessity.

 

Please don’t decide to ‘do for me’ what would make you feel good, important, needed, helpful.

My peers and I will learn that how you make me feel is irrelevant.

 


 

Please ask me what my needs or requirements are, or someone who has already found out what my needs are.

You can then meet the ones you are equipped and/or employed to.

 

Please ask me what independence means to me, or someone who has already found out what independence could mean and how it can be achieved for me.

You can then make informed choices about teaching it.

 

Please ask if I want/need help, and what help that might be.

You can then ‘help’ instead of hinder me.

 

Please ask me what contribution I would like to make.

You and I together can then negotiate and problem-solve our mutual contributions.

 

Please ask yourself and/or us all how our funds will best meet the needs of the group, school, community, family, country…

You and I will then each be acknowledging and meeting each other’s needs.

 

Please ask me how I feel.

You may develop:

empathy more so than sympathy

compassion more so than frustration

growth more so than ignorance

community more so than isolation

 

3/12/2014

Sibling Issues

So, all of my three children are blind. Are there sibling issues? Yes, but not the kind that families experiencing disabilities usually have.

Let me explain.

Number two and number three were reminiscing about each time someone’s fingers or feet were jammed in a car door. I added the time I jammed number one’s hand in the hatch door of a new vehicle. I have heard them ask each other to look at something (when they were quite young), expecting the other to see it as a sighted adult in their world would – without hands.

Our issues involved teaching them that, though they could request sighted assistance from their parents, they could not expect the same from their siblings. It may have been insensitive for a sighted person not to inform them that they were closing a car door, but it was insensitive of each of them not to warn each other of the same.

So much is learned by observation, and we are inclined to presume things will be learned automatically.

There are some who don’t get the opportunity to observe much to learn from (or what has been observed is unhealthy or inappropriate).

Teaching, though, doesn’t have to be a complex lesson. It may come in the form of conversation, a shared task, verbal guidance through an experience. Some need this into adulthood because they missed out on it while maturing, others may always need some form of guided instruction, even if just verbal or hands-on information. Not because they’re unable or unwilling to learn, but because the way the world, or me, or you, or we teach and model doesn’t fit with how the other is geared to learn.

Of course, as my children have grown to be young adults (with a much broader knowledge base than as little ones), it’s difficult to ‘switch off’ the teaching talk. Much to their chagrin and/or frustration. Sorry kids!

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.

 

The Seed

A seed was planted in good soil, unseen by anyone, in a personal act of love by one who desired to watch it grow and flourish and become what it was designed and planted to be.

The seed began to shoot and sprout up through the soil that had been prepared by the sower.

The sower then employed a variety of people to feed and nurture and protect and make space for the seed. The seed, once dead, now alive with fresh green growth, full of vibrancy and enthusiasm to become and produce all it was designed and destined to be.

 

The bank manager knew that growth comes from financial investment. So he surrounded and covered the small green shoots with money. But the sun could not break through to give the shoots the vital nourishment they required to continue to grow.

The librarian knew that growth comes from reading and gaining new information. She loved books of good quality so she surrounded and covered the small green shoots and the money with fine leather-bound books full of knowledge. But the rain could not penetrate the beautiful leather to moisten the good soil and nourish the seed with its roots beneath the surface, which was necessary for its growth.

The vermin controller knew that growth comes when protected from predators. So he covered the small green shoots and the money and the books with wire and a baited wooden trap to keep at bay and catch any that would come to devour the shoots or dig up the seed before it could grow to maturity. But the shoots were smothered and had no space to feed and grow.

The agronomist knew that growth comes with the absence of weeds. So she sprayed over the small green shoots and the money and the books and the wire and wooden traps. But the good soil became poisoned and made the roots and shoots sick.

 

And beneath all the good intentions, the new plant began to wither.

 

The sower was watching the seed he planted and those he employed to feed and nurture and protect and make space for the seed to grow…

…and his heart was breaking.

The sower had prepared the soil, the space, and the nourishment for the seed to grow to maturity as it was designed to, but chose to share the joy and fulfillment of contributing to its growth with others.

 

The sower called together the bank manager, the librarian, the vermin controller and the agronomist to discuss the withering of the plant.

To the bank manager, the sower explained the need for sunlight to reach the shoots to nourish them. Though he meant well, the new plant was malnourished.

To the librarian, the sower explained that the beautiful books prevented the rain from moistening the soil. Though she meant well, the new plant was dying of thirst.

To the vermin controller, the sower explained that the protective measures were smothering the plant. Though he meant well, the new plant was suffocating.

To the agronomist, the sower explained that poisoning the weeds in turn poisoned the soil in which the seed was planted. Though she meant well, the new plant was sick with poison.

 

“I chose each of you for the good you might contribute to the growth of this seed I have planted. But you have each been working independently instead of interdependently. The librarian can contribute to an informed approach to vermin and weed control, plant and soil nourishment. The bank manager can contribute to financial provision and management for this education and the necessary resources. The vermin controller and agronomist can use their new education and resources to promote the plant’s growth instead of its demise.”

 

As each one stepped back and observed the tender plant, they were able to recognize what its needs might be. In turn they also enquired each of the other to learn from observations they may not have recognized, or had prior knowledge of to have even been considered.

Most importantly…

…as a team in constant communication , those employed for service to the growth of the new plant – in fact to service of the plant itself – began to listen for and hear what the little plant was telling them. They heard and could see when the plant needed moisture, or sunlight or protection or space; because they were attending to the needs of the seed instead of what they wanted to give or to do.

 

The little plant grew tall and strong and was borne of new seed so that more plants could grow, providing clean air and beauty to enjoy.

 

The workers and the sower lived with much joy and with a profound and unfathomable sense of accomplishment as they witnessed the growth, and maturity, and provision, and beauty of the little seed, which became great.

 

Gina Schmidt 26/6/2014

Holistic Medical and Educational Practice

From a Facebook post of Stuart McDonald, Exercise Physiologist :

…when a person comes to you, you are not treating depression or addiction or mania, nor are you treating a broken leg, a broken marriage or a ligament injury. You are working with a person – a full, embodied, thinking, feeling, well-stocked-with-resources person who will most likely see things differently – and who knows what that means or what they need to see? – just because they have come to be with you for a while.

The rigidity and the harm that this rigidity does to patients concerns me greatly. Locking them into a diagnosis, branding them as this or that, being certain that if there are these symptoms or those then it must mean that such and such an outcome is the only likely – or even possible – one.

The greatest of my clinical teachers (Daryl Hobbs, Anthony Lett, Peter Thorneycroft, David Wilson) have shown me the wondrous world of grey and multicolour. The world of waiting without assumption and watching with curiosity as to how this experience may play out in their life today. Or tomorrow. Or maybe last Tuesday.

There is a need for concrete – and there is a need to dance in the leaves once the concrete is set.

The same could be said of education. Unfortunately ‘blanket’ systems appear to be the most efficient, but usually don’t attend the whole therefore making the efficiency only an illusion.

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?