Paper presented at SPEVI 2015
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.
…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.
If I could draw a picture of
This journey travelled on my own,
What story would it tell you,
Which colours would have shown?
The beginning would be darkness
New realities unseen
Goals obscured and jaded
Mist and fog my only scene
But with you, my eyes are opened
You each shine light on paths ahead
Darkness fading in the wake
Of information shared
I see movement, light and colour
A future hope for me and mine
You each brought hue and shade and pigment
If left alone, no sun would shine
Thank you all for being part
Of this journey of my life
And for the pieces of your own path
That brought promise into mine.
Process, progress, organise
Sift and strain and scrutinize
Think, reflect and ruminate
Pre-occupy and inundate
Withdraw, compose, concentrate
Stillness, quiet, separate
Settle, soothe, lull and quell
Listen, hear, perceive as well
Befit, apply, appropriate
Attend and differentiate
Select, determine, designate
Prefer, elect and allocate
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