Interdependence

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…’.

Quotes and Questions When Raising/Teaching Students With a Vision Impairment

A couple of quotes that have stood out for me, over the years I have been raising my children who are bright, loving, independent, unique and blind. Also some questions to be continually asking ourselves.

A number of Early Childhood Educators working with children who have a vision impairment used to tell me they did a lot of “hand-sitting” (as with teenagers one does a lot of “tongue-biting”).

Hand over hand manipulation, and too much information without experiencing, fosters an environment of little or no learning; the information or experience is not assimilated into the life of the learner.

A couple of teachers for students with a vision impairment have said that a good integration aide will “do themselves out of a job”.

The object is not to integrate the aide/assistant into the life of the student, but to have the student integrated into their own community of peers; thereby no longer having any need to be present, the student having become independent, and interdependent with their own group of peers.

A past presenter at the South Pacific Educators In Vision Impairment (SPEVI) said that the two skills he used every day of his life were orientation and mobility, and social skills. These were the two neglected for his entire schooling!

All the information in the world, and even access to it, will mean nothing if I cannot move about in, and interact with the world…my world. If I cannot belong, I will have no purpose or hope.

Some questions to leave in a personally prominent, but nevertheless private, place to foster a regular consideration of one’s motives and interactions.

Am I interacting with (name) in ways that make me an indispensible attachment to him/her?

…or…

 Am I interacting with (name) in ways that make my constant presence redundant?

 

 Are my interactions with (name) moving her/him toward independence, and interdependence within his/her peer group?

 

 Who can and will I talk with about resources, ideas that have worked already, suggestions and my own accountability in these things?

I would suggest that the student/child be named (whether this is for school or home) as one is then considering the particular person one is interacting with.

10/8/2015

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

Navigation

Navigating through myriad outward expressions of a person, community or program can be exhausting and daunting in the quest to respond, interact and relate appropriately; or according to our values and beliefs; or in a healthy way; or in the best interests of the other.

Parenting, of course, provides so much ‘opportunity’ to navigate and respond!

When our children were young we were regularly asked if we wanted to use melatonin to assist with their sleeping, as many parents of children who are blind are – or wish they had been. We declined as two of our children were good sleepers (relatively speaking) and we determined that the other child’s continued sleep issues were more person-specific. As a teen one child required meds during ‘tween’ years for seizures, on top of  being one who needs sleep, and the normal vague, weary, distance of being a teenager. Life is affected by all these, how to navigate through all experiences and choose a response is a mammoth ask.

Hindsight indicates to me that the need for routine and life management was, thankfully, the best response to attitude, sleeplessness and character development for one child. Unfortunately, a more boundary-setting and less leave-it-to-your-own-consequences response to the teen years of another would have been a more productive response.

Each family is different from another. Each individual within that family is different from another. The culture and background of each of us is going to be different one from another in every community or program we are a part of. Enjoy the journey of learning, and seeking, and responding. I have learned much about the body, the mind, the emotions, cultures, seasons of life, ideas I would never have come up with on my own from inviting input from others. I have not necessarily embraced or agreed with all I have learned, but some I certainly have, and all I have grown from. Consider as many option as you can, or are able to consider at any one time in your life – and then choose. It’ll be ok, even when hindsight shows you the choice wasn’t the best one or it was even the wrong one. Start again, as Anne Shirley (of Green Gables) said, “Tomorrow is fresh, with no mistakes in it.”

I fear choosing wrong, but I like to learn and be the other side of a growth opportunity more. So, I choose to learn and grow. Will you learn and grow with me?

 

From Stuart McDonald

I dedicate these sentiments I wrote (see below) to the people I know who find that they, too, may be beset by doubts, fears and anxieties beyond number, and who find themselves in a place of darkness, shadow and a woefully uncertain future. We live in our present because it is the only now we have.
__________________________________________________
Don’t Think That of Me (Stuart McDonald)

You cannot for a moment think of me as this person,
This man,
This wretch or this weakened idiot and fool you think me to be.
For in me, inside of me, as a man of this earth, as torn as the next and as sunken beneath the weight of my own heart as the next,
I am something else.
I am the thing you fear the most,
The faithful one
The determined and recklessly hopeful one.
Yes, quite possibly the most to be feared am I —
He who hopes even when he has none left to himself.
Emptied.
All self gone, all hope gone,
Empty.
Hollowed.
Hardly an echo of hope remains.
Hollow.
And yet I choose to still have something,
Something,
Some foreign and familiar thing
Drifting, floating and sinking within me.
Most to be feared am I.
This shell,
And this husk,
And this body burnt to a crisp.
For you would have me believe that
My fragile shell
Hollowed like a tree trunk carven an eternity ago
Struck down by lightening’s gleeful potency,
Is impotent.
And yet.
And yet, I hope.
My tears stream down my face and I hope.
In spite of my sunken soul and
This withered hand that reaches for someone else’s strength,
And wrapped in the cold blankets of the longest of winters,
I somehow choose some kind of hope.
It is not the kind I am use to.
Not me, my richest of dreams scattered in the winds like ticker tape in days gone by.
No, not like that.
And you think you can crush me?
Perhaps you can.
And perhaps even until the very last minute
I can look outside, beyond the claws
Beyond the mighty pressing weight you claim to possess
And which I certainly feel,
And perhaps even then … When all is fire and heat, and ice and stone all at once,
Even then,
I can gaze beyond this here
Beyond this now.
Even the hopeless can hope.
And I am that man.