Disability

A Private Conversation with a Fellow Parent – Some Reflections (with permission)

Sometimes we parents get to guide our children through learning experiences which are unfamiliar to us, outside of our current comfort zone, and seemingly not within our perception (or another’s) of the mainstream gig of ‘growing kids’.

One way to tackle these moments might be to chat with someone who is further along the parenting journey than we are…so, I recently got to have a great chat with a go-getter parent.

As my adult children have all been blind since birth, this chat was essentially around having a conversation with a child younger than mine, about the differences between a parent/child relationship, and the parent/parent relationship. It came about, though, because the child had heard mum and dad during intimate moments.

Many of us have had the experience of walking in on dad and mum during sex, many of us have had our children walk in on us, and many of us feel either uncomfortable or unsure about how to respond. Some of us also have the consideration of what our children can/can’t see, hear or comprehend no matter what the new experience encountered.

After hearing the parent’s story of what had been happening with their child, how the parent themselves felt about the kind of conversation they may need to have, and the child’s vision impairment coupled with some level of communication/comprehension difficulties, we brainstormed some strategies for the immediate, and some suggestions for in the future.

The child had been repeating sounds heard from mum and dad’s room when they’re alone, and those sounds were beginning to be repeated at particular times. The parent believed that the frequency was increasing and wondered what, if anything, she might do about it. Since there was perceived future negative impact for the family and their relationships, and seeing a potential learning opportunity for the child, these are the strategies we worked out together:

  • Talking with the child about their own special relationships (e.g. with a grandparent or sibling)
  • Discussing something that the child does only with that person
  • Explaining to the child that the sounds heard from the bedroom were only for mum and dad, as their special times with another family member are theirs alone

Because of one of the diagnoses the child has been given, it was recommended that a chat with the educational psychologist that the family already connect with might be a good idea to talk through some of the possible related experiences they may have with the child as they move into teen and adult years.

For the parents, I suggested that the bedroom may not be the only place for physical intimacy. This might reduce or eliminate the child associating what was heard with that room, and the parents. It also brings with it some new interest for the couple relationship…nothing wrong with that!

Who could ever say that we don’t have anything to learn by being a parent?

And thanks to the other parent for trusting me with their story, and wanting to share some of their own journey so others may have a few more tools to work with.

Cane Verses Guide Dog

By Christine Casey…Teacher, musician, friend

Since I received Lainie, a number of people have asked me how using a guide dog is better than using a cane. I’m still not sure that I can explain it well, but here is a comparison of how I felt the other week, walking along Swanston street with Lainie compared to how I have felt doing it with a cane earlier in the year.
With a cane:
I must listen carefully as concentrating to hear voices, footsteps, traffic and the echoes off buildings, posts and pedestrians helps me to keep myself orientated. Despite my careful listening resulting in a greatly reduced number of collisions with objects and people, my cane is constantly becoming entangled in signs, seats and legs. Every thirty seconds I seem to be muttering an apology. My speed varies considerably as I focus my concentration on dodging things and people and listening for clear paths. The appearance of a street sweeper or similar constant and loud noise causes frustration as it reduces my ability to hear potential obstacles. I secretly wish the Melbourne City Council would ban all buskers as they attract crowds which block my way and require careful negotiation. While I realise that my fellow humans are probably not paying me any attention, I feel incredibly conspicuous and somewhat awkward. By the time I make it to my destination, I’m longing for a rest and some quiet.
With a guide dog:
As the dog picks a path through the crowds, I am able to relax and appreciate the sounds of the city. I hear the tram bells, and notice music drifting out from doorways and I catch snippets of conversation from passing people. A wide variety of scents waft on the air. There is a gentle sun, and a slight breeze. I feel the dog’s movements through the harness handle and follow where she guides, only paying enough attention to ensure that she continues in an overall straight direction and to detect if she should become distracted or uncertain and require encouragement or instruction. My steps flow and there is little need to vary speed, except for especially crowded patches. The music of the buskers adds something special to the atmosphere and I feel a great fondness for them and this city which I now call home. The free-flowing nature of the journey makes me feel equal to my fellow pedestrians and, while I do overhear the occasional comment on the clever dog, I feel as though I blend into the crowd. When I reach my destination, I am somehow both energised and relaxed: ready for the next task of the day.

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

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.

 

Guest Post – Child Number 3

*prepare for a random rant that probably goes all over the place and makes hardly any sense*

So in English we are currently studying a unit on protest songs and poems. The other day as we were analysing a song by Archie Roach about the stolen generation, our teacher was explaining the meaning of the word ‘prejudice’. She said it is when a person has misconceptions about another person because they are from another country, and that was all.

I understand that we didn’t have time to go into a lot of detail, and maybe she does think it can be for other things as well as a person’s nationality, but I personally thought that was a bit too narrow. The definition in the Oxford Dictionary says: “A preconceived opinion that is not based on reason or actual experience. Unjust behaviour formed from such a basis”. If someone has a prejudice it could be because someone has a disability, or because they have a different religious belief to another person, or perhaps even because they were educated differently to somebody else or absolutely anything. She made it sound like a synonym for racism which I don’t believe is quite right. I think the other problem when someone has a prejudice is they don’t tend to realise they have one.

I guess this got to me a little because of past personal experiences where people have made assumptions and tried to help/teach in a way that was actually quite unhelpful or inappropriate. Please realise I’m not asking for sympathy and I understand I’ll get this kind of thing practically all my life, but if people presume they know what they’re doing all the time or aren’t happy to change their ways then how is that helping the future generation of adults (as in my age level and below) to be socially acceptable and treat everyone equally?

There. I’m done now! If you have any thoughts on the topic and feel like commenting please don’t hesitate as I’d be interested to hear what others have to say. Also note that I’m not trying to have ago at the teacher mentioned above.

Very mature response from one’s child. Very proud mother. ‘Nuff said!

 

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.