Therapists

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.

 

 

This Journey

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.

 

 

15/1/2015

For SPEVI

 

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

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.”

 

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.