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Inclusion - A parent's perspective

23 May 2023 10:00

Today I would like to talk about inclusion and participation in mainstream out of school activities for children with special needs and disabilities, the very reason that I started this site. I had very little knowledge of disabilities until I had my son, Sean. The things I knew about disabilities were mainly medical. Therefore, it was a rather negative view. It was about what they can't do and what problems they may have, etc. However, the birth of Sean opened up a whole wide world to me and I began to realise that having a disability does not necessarily mean suffering and a poor quality of life and indeed many people with disabilities can do most of the things that those in the mainstream do. 

Medical Model vs Social Model of Disabilities

I came across this after the birth of Sean. Basically in medical model of disabilities, the person who has the disability is viewed as having a problem so he or she cannot do things that "normal" people do. The solution is to "treat" or "fix" the disability and if there is no treatment of fix, the person can't participate in the activities and that's it. In social model, the failure of people with disability to participate is believed to be due to barriers caused by the construct of the society. The simple example is someone on a wheelchair cannot go to a museum because there is no wheelchair access. In this case, the barrier is due to the design of the building and not due to the person who cannot walk. So changing the design of the building allows people in wheelchair to visit. Another example is if the society is not relying on written words to get messages across, people with dyslexia will not be seen as having a disability. Therefore, the construct of the society has, in one sense, created the disability. I remember after the birth of Sean, my dad told me that when he was a boy in Indonesia, he used to go to a quay to play and often saw a man, who looked like he had Down Syndrome, work as a labourer there. He was just working as "normal". People in rural Indonesia those days (just after WWII) often did not receive education so most people did not know how to read or write. So his learning difficulty has not created any problems.

This distinction is important because in the social model, the aim is to identify barriers and change or adapt to remove the barriers. This allows people with disabilities to participate more fully in the society.  More and more professionals and organisations are now aware of this model. However, I still see medical model being used. When Sean was in Year 5 in primary school, I went to visit a few secondary schools to see if Sean could go there. That was during covid time, so it wasn't too long ago, and I still had SENCO (special educational needs coordinator) telling me that a lot of their pupils with learning difficulties would go to special schools in Year 9 or 10 because they can't keep up. The aim of inclusion is not for the child to catch up with the peers or to be able to perform as their peers but to adapt the provisions and support the child to progress in his own pace. Medical model is about getting the person with disabilities to be "normal" and this is an example. 

Does inclusion only benefit those with disabilities?

In recent decades, there has been a big push towards inclusion. So is inclusion just a moral duty and does it only benefit those with disabilities? From my own experience, I would say inclusion is not just a moral duty and it benefits both those with disabilities and the wider society. 

Firstly, if those with disabilities are better included in the society, they will have better mental health and that potentially brings down the cost of health and social care. Secondly, in an inclusive setting, their non-disabled peers often become more empathetic and they learn to be kind. When Sean first started reception in a mainstream primary school, the school arranged some older children to help reception children. Sean was particularly fond of a few girls. A couple of years later, the girls went to secondary school. Then one summer, my friend asked if Sean would like to go to a summer bible camp with her son, who has complex needs. I said why not. And one day when I dropped Sean off at the church, I saw this girl, who was one of those that had supported Sean in primary school, went to greet my friend's son once he stepped into the church. My friend's son was non-verbal and it was quite difficult to communicate with him but this girl was not afraid and she just treated him as a little brother and greeted him with warmth. Another example happened when Sean was in reception. This friend of mine took her son to the playground and usually children would just ignored him and left him alone. That day a little girl went and played with him. My friend started chatting with the girl's mum and found out that the girl was in the same class as Sean. Her mum said she went to play with the boy because one of her friends (i.e. Sean) has Down Syndrome and special needs.

Thirdly, people with disabilities are not there only to receive support, they can contribute as well. I lost count of the number of times people tell me that Sean has been helping with all sorts of chores in various groups. People with disabilities can, just like their non-disabled peers, bring joy to the group as well. They just need to be given the opportunities. 

What parents want - a personal perspective

So what do parents want when they are trying to look for activities for their children with SEND? As a disclaimer, I am not representing all parents. I am just writing these from my own experience and a number of anecdotes of other parents' experiences. I am in a number of Facebook groups and have seen different views on this. It is a spectrum from they don't mind paying more or being there to assist their child to the view that organisations must be inclusive and they cannot charge more or insist parents or carers to be there to support their children. While it is absolutely necessary to adhere to the law, we don't want to see people doing it just because the law says so. As a parent, I would like providers to be welcoming, have an open mind about disability and see my child as an individual. I remember when I called a swim school for swimming lessons, they said, "Sorry, I don't think we can support your son." was the answer just after I told them Sean has Down Syndrome. They didn't ask what support he may need and this is unacceptable. If you do not know the supports required, how do you know you cannot provide. This is in contrast to the swim school that Sean is currently in. They were welcoming and they just told us to come to the trial session and see how it goes. And I am pleased to say that Sean has stayed with it since and has just gained his stage 6 award.

The law requires that providers of services or goods to make reasonable adjustments to make sure people with disabilities are not disadvantaged. The law does not say you have to make adjustments regardless of the cost. Reasonable adjustments to a large organisation will be very different to a small club of only a handful of staff. The law also says that it should be anticipatory. Therefore, before you have anyone coming to ask for your service, you need to think what if a person with disability comes. In the example above, the swim school should at least ask what supports are needed and then assess whether they can reasonably provide it. 

I also appeal to those in the disability community that in order that providers are willing to include people with disabilities, we need to support them as well. If we only demand them to be included whatever the cost to them, they will be more reluctant to do so and end up doing the minimum. Of course, we should complain or even take those who blatantly flouting the law to tribunals or courts but we need to be more understanding in particular to small providers and be willing to work together for a solution. Some people seem to forget the term "reasonable" in the law and demand every single provider to provide one to one support to their young people regardless of the cost.

As a parent myself, what I would like to see is for my son to be welcomed, accepted and able to participate in a meaningful way in a club or organisation. Personally, I found attitudes of the people in the organisation or club to be far more important than training that they have received or any extra resources. If they are friendly and welcome my child, I can work with them to make inclusion work and that include being my child's one to one if needed. I see this also to be a learning journey for both the organisation and us.