No right of access to the “ordinary” world?

 

We must be prepared to listen to the experiences of parents if we want to produce a more inclusive education system.

We must be prepared to listen to the experiences of parents if we want to produce a more inclusive education system.

My friend and colleague the artist Jean Edwards whose work I mentioned in an earlier piece that I had written (The art of expression January 30th 2014), recently drew my attention to a blog called “The Diary of a Not so Ordinary Boy,” which is written by the parent of a young man named Sam who has Down syndrome. As might be expected this mother is able to articulate the experiences of living with a child who presents with some learning difficulties, in a manner that most of us would struggle to achieve. The number of years I have worked in this field are insignificant when it comes to an attempt to understand the lives of parents who have experiences such as those described in the piece brought to my notice by Jean.

Sam’s mother describes an interesting transition in the life of her son, one that she herself clearly was unsure about at the time when she made some significant choices. From the language she uses, it is evident that this parent had made a commitment to ensuring that her son was included in all aspects of education and the wider society in which he lives. But it is clear from what she says that she has felt frustrated with some of the difficulties that she has faced in enabling Sam to be included in a number of activities which would seem to be more readily accessed by his peers. Having over an extended period of time made tremendous efforts to enable Sam to participate in a range of out of school and extra-curricular activities, which would allow him to make friends and be a part of what she describes as the “ordinary world,” Sam’s mother has embarked upon a different direction. The way she phrases this is to say:-

“Now, though, I have learned to do things a little differently.  Now, I am happier for him to march to the sound of his own drum, rather than mine”.

Sam’s mother has made decisions that resulted in Sam moving further away from the “mainstream” that she had desired and to seek refuge in more specialist provision. The language that she uses to describe this process provides ample evidence that this was not a decision taken lightly.

“Now that Sam is in special education it would be easy to accuse us of excluding our son from society, hiding him away from the cruel gaze of the outside world, and, as a younger mother, that was certainly something I was afraid of.  My son wasn’t somebody to be ashamed of; he was (and is) different and proud, and we are proud of him.  But when it came down to it, I wasn’t prepared to sacrifice his education to an ideal of inclusion that I didn’t see working for him”.

In many ways I find these words of Sam’s mother to be very sad; not so much because of the decision that she has made, but because of the situation that led to her taking this action. At the conclusion of her piece, she writes

“Rather than sending Sam out into the world, maybe we need to invite it into ours.  And that means more than school.”

My interpretation of these words, and I hope that Sam’s mother will forgive me if I have got this wrong, is that whilst she, and probably other parents with children who are described as having special educational needs, have made a concerted effort to have their pupils join the “ordinary world”, this world is not yet prepared to fully accept children like Sam. I am not so naïve as to believe that in many instances this is not the case. I am indeed acutely aware of schools and other organisations that find many reasons to reject children and describe them as unsuitable candidates for the kind of institution or society that they have created.

How should we react to the situation in which Sam’s mother finds herself? In her blog she states that Sam is now far happier attending clubs that are run by professionals who understand and meet his individual needs. He is, in one sense, far more included in the activities of these than he ever was in those more “mainstream” organisations, where he was not understood. I can fully appreciate her sentiment that maybe we need to ensure that others are invited into Sam’s world in order to help them to understand his needs and those of others who have been marginalised or rejected. My main worry is that it is far too easy to refuse such an invitation and that the many battles that have been fought by parents over the years for their children to become included in the “ordinary world” may become diminished if we are less than insistent on seeing the mainstream change. (See Parents and teachers, learning and teaching together March 3rd). And here we have another problem. Why should the mainstream change if they see no reason to do so? Unless they are enabled to see the benefits to be gained from creating a more inclusive education and social system, they are unlikely to make efforts for what they may see as the sake of a minority.

I am in no way critical of Sam’s mother for the actions that she has taken. I know personally several others who have made similar judgments about the inability of the mainstream to provide for their children and have followed a similar path. However, I do feel that it is an indictment of society if we still believe that it is acceptable that children who are perceived as being “different,” a label which in actuality usually means “inferior,” can be denied access to the same learning and social opportunities made available to their peers. It is surely the responsibility of all of us to support Sam and his mother in bringing about the change we would all wish to see.

The “The Diary of a Not so Ordinary Boy,” can be read at:-

http://notsoordinarydiary.wordpress.com/

 

10 thoughts on “No right of access to the “ordinary” world?

  1. This is Nancy’s tweet having read this post, Richard,
    @nancygedge: @JeanEd70 wow, what a perceptive blog post! I am much amazed that so much has been seen from my little post on transition to secondary!

    • Hi Jean,
      Don’t think I could cope with the twitter thing. I prefer to write at leisure rather than in haste! Thanks for bringing this to my attention. Nancy has said so much more than I could and with far greater insight.

  2. Hi Richard,
    Thank you very much for reading my blog, and for your insightful response to it.
    The question you raise goes very much to the heart of many things I feel about my extra-ordinary child – what are we going to do about it? This question leads me down so many roads that I almost find myself stymied by the enormity of the question.
    Thank you for reading my blog – I shall continue to explore themes on inclusion, acceptance, education and wider society in it.
    Nancy.

    • Dear Nancy, It was my privilege to be able to read your blog. By posting your words you are bringing important issues to a wider audience and therefore contributing to an on-going debate. Professionals need to hear the voices of parents and to recognise the dilemmas that are often faced when making choices and decisions about children. Often it is articulate parents such as yourself who end up having to speak on behalf of those who are less confident or afraid to voice their opinions. I hope that by putting the link to your blog on the piece I wroye that more people will read what you a=have to say.

  3. Hi Richard,
    So heartening to read and felt how a mother was forced to take that step to her son in spite of her dilemmas. Her post perfectly describes what i have undergone when i decided to put my son in mainstream school after so many years of behavior therapy,social group sessions in spite of my own dilemma and that of my family that how well he would be perceived by NORMAL SOCIAL SYSTEM . “JUST A WILD THOUGHT, THOUGH WISHES THAT IT NEVER BECOMES TRUE” , “When these MINORITY becomes MAJORITY (as per statistic data they present now), IMAGINE!! THE SO CALLED NORMAL SOCIETY has to fight for their inclusion in a new social system where no peer pressure, no pressure to come at top in every exam or sport, no labelling, etc… . IF THIS MERE THOUGHT FRIGHTENS THEM SO MUCH, THEN THEY BETTER WAKE UP AND DO THE RIGHT THING NOW!!…
    kavitha

    • Hi Kavitha,
      Yes, I sense your anger. However, for many years I think many of us have been anxious about the marginalisation of children and in some instances little progress has been made, I think it important that there is unity between those parents who are struggling to gain equity for their children and professionals who share their commitment to improving the life chances of these children.

      • Hi Richard,
        I agree with you. In the process of trying to make himself understand his true self, be it like having good language skills in spite of his challenges, adequate social skills, having strong belief in not to hurt anyone with his words,actions, helping others when he finished with his work in his classroom, we are fortunate enough to have had many good and committed people like, the behavior therapist who came with new ideas to make him eat by himself though he had tactile issues,his Montessori teachers who patiently taught him to write each alphabet and numbers,his Montessori school principal who patiently sat beside him till his tantrums got over and continued her teachings… and so many people… we are in debt for our lifetime for their true, committed time and effort… our son was primary and we (therapist,teachers,parents)were in sync with each other all the time. The reason for my anger is in the place of authority to make these necessary changes in our education system i have never seen or met one committed soul like these people…all are sitting ducks….
        kavitha.

        • Hi Kavitha,
          I think we need to begin from the perspective that many of the people in positions of responsibility to make decisions are largely in ignorance of the challenges faced by parents and their children. As educators (by which I mean teachers and parents in partnership) we need to recognise that the process of education is not just about teaching the child. We need to address a much wider audience.

  4. I totally agree with you Richard and Kavitha …

    [… this world is not yet prepared to fully accept children like Sam. …] … I am focussing on these words…as this is what I hear time and time again… and have heard for the past 30 years I have been associated with the field of Special Needs!! Even today I heard a similar comment…so when is the world going to be ready???…

    When a human being gets old the needs are very similar … whether it is with mobilty, vision, speech, hearing, cognition and memory, co-ordination, behaviour etc… so do we all not want to be accepted then??

    Or is society in denial of that future when all of us go through atleast some of those difficulties to some degree??

  5. Hi Suchitra,
    Maybe the world is not prepared to accept those of us who see the need for greater inclusion. When people fear change they tend to close their minds and keep those who want change at a distance. If we don’t encourage others to invite Sam into their world it is unlikely that they will choose to join his. Let’s not give up though, we have been making this journey for a long time and there’s no turning back!

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