Sharing Knowledge Course

I am on this course at the moment, indeed, it was the one I was also booked in for yesterday and which caused all the fuss from yesterday as well and is organised by ‘Parents in Partnership’.

The premise is that together, families of the disabled can bring about change both for themselves and for future generations. It is certainly a good way of thinking and will, I am certain, help achieve the aim.

Annoyingly, borderline, frustratingly, there is where my positive viewpoint ends.

My notes of the day are in the car so I am bound to leave something out here in my summary but I shall have made my point.

Everything thus far has focused on the ‘family’. Rarely has the word ‘Carer’ been used at all and I have read ahead to the further few sessions which are scheduled. The thrust seems to be for the ‘family’ to be the facilitators to bring about change for their disabled family member, to learn how to manipulate the system and ensure the full entitlement under law is achieved. I’d agree with that except that, the ‘family’ are not a machine. They are living, breathing and feeling individuals who also have complex needs of their own and often have other children to care for.

When we refer to the ‘Carer’ as simply ‘the family’ we then belittle the considerable work they do. We change it from the exceptional requirement to care that is the Carer and lower it to the expected task of the parent. It is precisely this label which has caused so many disabled people to enter the care system when their family is no longer able to cope. It is because it is expected that a parent would care exclusively that there is a diminished need to provide resources for that caring role.

So, by this omission, the course is failing.

Being inclusive and non discriminatory. That is the aim of the course as well. Despite that, I found it extremely difficult to hear today. The hall has terrible acoustics. It is not too dissimilar to a swimming pool in that respect. I sat at the front to assist what I perceived as a possible difficulty and I was able to hear most of what the speakers said. However, during interactive sessions with others there in small groups I found hearing all but impossible. This was then not helped by one of the facilitators turning on some background music. I asked that she turn it off again because it was adversely affecting my ability to hear with hearing aids and she then started talking very slowly and clearly with exaggerated mouth movements and this made me feel as though I had just informed her I didn’t quite speak English well or was perhaps a little under achieved.

As it happens, hearing or otherwise in these small group situations proved pointless. One woman was from MENCAP and was so clearly used to being in charge as a professional expert mother of a disabled person who works with disabled people. Another woman was most vocal and demanding even though she seemed to have little understanding of how the system works and, indeed, her experience of caring was for someone with only mild difficulties about which she was clearly very bitter over her experiences with social services. The other lady was well educated and more mature but, like me, unimportant in the agenda of the other two. This fact was borne out in that our group was always the last finished and with the least thought out argument. What sicked me all the more was that long after we were asked to stop, those two continued alone to create their agenda. Speaking of being asked to stop, on one occasion one of the speakers/organisors came up behind us and said “Right now ladies, very nearly time to stop”.

Of those tasks we were asked as small groups to provide both were pointless and dommed to failure. One, for example, was to design and draw a poster for a new group, to name it, to say whether it needed funding or not, what the funding would be spent on, whether it would require a committee, where it would serve etc … for this we were allotted 20 minutes.

The setting up of a group is an admirable objective in its own right but 20 minutes and to do so in order, I presumed, to see if anyone understood the complexities, was rather pointless and did not really fall within the objectives of the course.

As with these training courses, there is a book of interesting tasks which can be included to demonstrate an understanding. The one chosen today was where each participant, in this case, the entire amount of those present, was given an apparently random new identity which they then had to share with the room. The participant themselves were first asked and then the group to identify their position as perceived by society and respresented by their position up or down the room. It is a good exercise except when, as in this case, those there are clearly already aware, because of their caring roles, of the prejudice which exists. Something which compounded my dislike for this particular task was that we were asked not to read what our identity was until just before we shared it with the group. I could understand that but clearly they had overlooked a very important point, what if one of those identities was wholly inappropriate for the individual? In my case I discovered my own identity to be ‘Local councillor who is openly gay’. I felt very awkward having to stand up and be judged on my sexuality as happened. The ethos of being inclusive and non judgemental went out of the window at that time.

There were other examples of why I feel this session is not working but they are somewhat similar and I am aware just how long this is becoming.

I shall give another session a try next month but am not hopeful things shall improve.

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