Summary of Activities at Seminar 2
The centre-piece of Seminar 2 was the theatrical sketches by members of Inform Theatre (see Videos Seminar 2), but also highly significant – and revealing – were the activities that we ran around each of the sketches. Each sketch, itself formulated with reference back to themes emerging from Seminar 1, was paired with a Wall Chart activity wherein event participants were asked to consider a fundamental question about their experiences as someone with learning disabilities living in contemporary Scotland/UK. In each instance, following the sketch and some instructions from Ed and Nicola, participants were invited to tick/cross a column on a wall chart (each column representing a particular answer to the question asked) and, if they wished, to write (or get someone to write for them) on a post-it note any further ideas that they held about issues related to the particular question asked. Participants chatted at length about the questions with each other, and with their supporters and the seminar team, before deciding on their responses. Here below, we show images of the wall charts, surrounded by post-it notes, and then we provide a brief discussion of the responses received.
Additionally, we held two Discussion activities, the first reflecting on the first three sketches/wall chart activities before lunch, and the second reflecting on the final two sketches/wall chart activities after lunch. We have called the first discussion Inclusion and Exclusion and the second Sameness and Difference. The discussions were facilitated by groups of participants, who were sitting at different tables around the room, drawing and writing (where necessary with assistance) on paper table cloths over the tables. These discussions were for the most part noisy and animated, and involved varying combinations of all people present, and our table cloths ended up covered in inky scribbles and pictures, some of which we reproduce below, together with commentary. Suffice to say that the images here and our commentary, on both the wall chart activities and the discussion/table cloth sessions, only scratch the surface of what emerged over the course of the event. Hopefully it can still provide a taster of what was covered for visitors to this site who did not enjoy the pleasure, excitement and challenge of being present on the day.
A final collective Feedback session – badged as ‘Story of the day and speaking back to policy-makers’ – was held with all present at the event, with the particular ambition of clarifying issues that people would wish to see brought through from Seminar 2 into the proceedings of Seminar 3 (with a more policy-facing focus).
Please note that clicking on the images below will enlarge then, hopefully making them easier to see. We do recognise, though, that some of the images are not all that clear.
Activity 1 – ‘Who hears you?’
Yes – 4; No – 0; Sometimes/depends – 10
Encouraging that nobody felt that they were never heard; and the figure of 10 suggests that the majority of our participants were aware of how context can make a difference as to whether they are ‘heard’ and whether their ‘voice’ is taken seriously. On who needs to listen?, there was an interesting array of responses on the post-it notes, ranging from “parents” to “friends” and “people in the house” (group home co-residents?) through to “professionals”, especially “care workers” and “advisory workers”, to “everybody”. One participant, on the linked pink post-it notes, remarks that they “it is hard for me to talk,” that “some people do not try to understand,” that “I get upset” / “I do not like upsetting other people,” and so “then I do not talk.”
Activity 2 – Benefit cuts?
7 participants indicated that they have had their benefits cut; 4 said that they had not; 4 said that they thought benefit cuts could happen to them
The qualitative comments about their fears should benefits be cut are revealing, giving a strong sense of concern about now being to engage in various kinds of activities, to attend ‘social groups’ and secure ‘evening support’, etc. In part, this is about not being able to keep accessing more formal means of ‘support’, but it is also about the more intangible dimensions of doing things, maintaining friendship networks, etc., that are arguably just as central to ‘quality of life’. “I worry it could happen” is another sort of comment, implying a certain horizon of concern for people with learning disabilities (PWLD) in the current ‘age of austerity’.
Activity 3 – Sources of support
Wide range of ‘support’ recorded here, both formal and informal. In terms of the ticks here (and participants could tick more than one column) we see the following figures: Family – 14; Clubs and groups – 11; Other PWLD – 8; Advocate – 1; Personal assistant – 4; Day centre – 3; Care manager – 5; Learning disability nurse – 2; and then various Others commented upon more qualitatively on the post-it notes.
The snap-shot significance attributed to more informal over more formal sources of support is marked, and it is also worth underlining the importance lent to other PWLD and also ‘clubs and groups’ (where participants will be mixing with other PWLD) which suggests both the potentials (as yet possibly unrealised as fully as they might be) of PWLD to support one another – something exceptionally obvious throughout Seminar 2 – and also the value of allowing PWLD-dedicated spaces (rather than simplistically regarding them as problematic instances of the social exclusion of PWLD from ‘mainstream’ society).
The qualitative remarks here are again revealing (see below): Garvald is specifically mentioned, including a workshop leader and outreach staff at this organisation, as well as other Third Sector organisations (Scottish Autism) and then some more formal services (social worker, key worker, college, a Local Area Co-ordinator, “staff at my flat”). Tellingly perhaps the most frequent references are to ‘friends’ (on 6 post-it notes), as well as family, with mentions for “friends at Inform [the theatre group]” and an “inclusion group”. The potential for receiving support from a learning disabled peer group is implied here, although one participant explicitly states that “I would never ask my group for help.”
Activity 4 – Choice and decision-making (two tick-sheets used for this activity)
Perhaps surprisingly, the learning disabled participants at Seminar 2 tended to feel that they do have a considerable amount of ‘choice’ over crucial everyday life decisions, although that may reflect the relative capabilities of these participants. In this case, moreover, we cannot discount the possibility that the relative complexity of the exercise led to some participants preferring to put their ticks (or crosses [we do not think that any significance attaches here to whether respondents used a tick or a cross]) in the same zone as others appeared to be using. But it would be unwise to discount an apparent message that these PWLD, at least, do not feel overly ‘controlled’ in choices that they make. The axes revealing a sense of having limited or lesser choice would be ‘Where I live” and maybe “How I get around,” but the difference here is only a matter of a handful of ticks or crosses.
Activity 5 – ‘Sameness and difference’; ‘equality and inequality’ (two tick-sheets used for this activity)
In terms of the counts here:
Are we all the same? = Yes – 0.5; No – 11.5; Not sure – 2 (total responses – 14)
Should we all be the same? = Yes – 8; No – 5; Not sure – 1 (total responses – 14)
Are we all equal? = Yes – 2; No – 9; Not sure – 2 (total responses – 13)
Should we all be equal? = Yes – 10.5; No – 0.5; Not sure – 2 (total responses – 13)
A first thought it that this exercise was obviously asking our participants to think abstractly about concepts that are challenging for all of us – those of ‘sameness and difference’ and ‘equality and inequality’ – and it might be supposed that it would be impossible to operate on this level with PWLD. In the view of the organisers of the event, though, such an assumption would be misguided, for our participants clearly did engage with the concepts and did make sincere efforts to respond to our prompts here. Indeed, while a highly subjective remark from us, the organisers, our sense was of participants seeking to think for themselves, not merely putting their ticks/crosses where others’ had done so: a number genuinely took a long time to come to decisions about there to put their ticks/crosses.
The pattern of responses is extremely interesting, and does hint at the views that, no, ‘we’ are indeed not all the ‘same’, and, no, we are certainly all not ‘equal’. There was more uncertainty about whether we should all be the ‘same’, with many thinking that, yes, we should be all the ‘same’. There was more certainty about whether we should all be ‘equal’. Of course, our provocation here is in part tied in with the now just changed Scottish policy framework for learning disability (since 2000) entitled The Same as You?, a powerful/visionary notion, albeit not without its complications in terms of exactly what grounds am ‘I’ supposed to be (able to be) ‘the same as you’. The highish number of participants signalling that, yes, we should all be the ‘same’ possibly reflects their familiarity with this policy framework or, at least, with the terminology. That said, and as is clear from the associated video clip (Sketch 5), participants were also very aware of many ways in which people are patently not all the ‘same’, coupled to a sense expressed by some that any simple assumption or even attempted imposition of ‘sameness’ could be problematic. Tellingly, then, there was an awareness that ‘equality’ does not necessarily demand us all to the ‘same’; and one participant was particularly keen to emphasise – by writing on a post-it note – that their understanding of the best set of responses to the questions would be as follows: Are we all the same? – No; Should we all be the same? – No; Are we all equal? – No; Should we all be equal – Yes.
Table Cloth Feedback – Sample of our ‘Tablecloth’ scribblings
A feel for what our feedback table cloths looked like can be gained from looking at the following examples (we know that the specific words / images will not be clear here):
Table Clothes 1 – ‘Inclusion and exclusion’: not exactly how we introduced the table cloth work, but it makes sense to characterise certain contributions to some of the table clothes as addressing various dimensions of whether participants feel ‘included’ or ‘excluded’ (and, indeed, with respect to what [groups, people, places, activities, events, etc.] they either feel ‘included’ or ‘excluded’).
What participants were finding to be helpful – and hence, it could be said, promoting their ‘inclusion’ – appeared all over the table cloths, as above, with reference to family, formal organisations and also more informal ‘service user groups’ (other PWLD). The spectre of benefit cuts is never far in the distance, however, as a possible threat to the ‘inclusionary’ possibilities detailed on the table cloths (and see the post-it note here). This issue recurs on many of the table cloths, often alongside positive assessments of what does make for ‘inclusion’.
Clear sense expressed in some of the text here of individuals feeling ‘included’, and indeed able to make supported ‘choices’, often in association with other PWLD (as at Garvald).
This individual clearly feels that they have achieved a measure of ‘inclusion’ and hence a decent ‘quality of life’, but are fearful about benefit cuts: “The uncertainty of the future”.
Some indicated that they have “[g]ood neighbours”, implying a measure of ‘inclusion’ in wider communities/neighbourhoods – in this case, James had previously experienced ‘bullying’ (see below) but now felt there to be “[a] happy ending … at last.”
On the subject of ‘where to live’, and what that could mean for ‘inclusion’ and ‘exclusion’, one participant provided a very graphic indication of difficulties experienced. Lack of choice over accommodation, expense of getting into town, not being able to get a wheelchair on the bus, not liking the area and finding it unfamiliar: all of these concerns are coded into this table cloth segment, including a worry about “[w]here can I live independently?”
What potentially makes for ‘exclusion’ was also explored on some of the table cloths – beyond the specific threat of benefit cuts to many forms of ‘inclusion’ – and it is worth noting the following, obviously inflected by one of the staff team members (but they absolutely would have been responding to the concerns of a participant with learning disabilities). The focus here is on “environmental restraints,” meaning here social-communicational barriers arising in everyday life when a person “is lost behind presumptions and labels [not even diagnoses]” – with the answer being getting others to listen to an individual’s ‘voice’ (“key is communication”). Importantly too, there is an acknowledgement that a PWLD can offer “challenging behaviour,” and the implication is that better communication might diminish that behaviour.
A strong sense emerged across the table cloths of the overall ‘package’ of people, agencies, services, etc., formal and informal, creating the context for PWLD to feel ‘included’, graphically illustrated in the top left quadrant of this table cloth extract.
Table Cloths 2 – ‘Sameness and difference’
A strong sense emerged of participants recognising lines of difference, not least among their own immediate friendship/social circle, likely including other PWLD, but also resenting simplistic and potentially damaging ‘labels’ being imposed upon them (or, indeed, on anyone). For some participants, there was the suggestion of a bigger vision about how all humanity should be regarded and treated in this connection.
“Bullying is bad”. Some of the discussion about ‘sameness’ and ‘difference’ hinged around issues of “bullying of people who are different” – “really important that people are not bullied, are not ‘left in the corner’”; but it also alighted on questions of how “friends are different from one another – like to do different things”, the message being that these differences should not be a reason for any discrimination against them. On the table cloth segment further below, there is more on ‘bullying’ (James being made to “dance in the playground”), but also worries appear about authorities such as the police maybe not taking the concerns of individuals/families sufficiently seriously.
Final Feedback Session – seeking to identify key ‘Questions’, or areas of concern, for transmission from Seminar 2 into Seminar 3
Key points above (not noting very specific suggestions, which nonetheless clearly matter a great deal to particular individuals)
“Don’t cut benefits”; “Ensure that you do not erode support packages”; “If you lose your social worker, you are thrown back on resources/health of families”; “Choice only comes through having the right support – do not remove that support.”
“If you are poor, you cannot make the best choices.”
“Do not undo the good work of the last few years” (a particularly important claim: much positive progress has been made in Scotland under the orbit of , you cannot make the best choices.”
“Do not undo the good work of the last few years” (a particularly important claim: much positive progress has been made in Scotland under the orbit of The Same as You?, and it is crucial not to compromise this positive progress through cuts and other re-orientations of policy).
Key points above
“Everybody needs the same opportunities to communicate”; possibilities for more specialist training in communication methods suitable for people with learning disability?
“Can doctors/nurses understand more about learning disability?”; link to broader reflections on health issues – need for “[m]ore health checks?” – as well as possibility that individuals can be empowered to assist their own health status: “Can we, individually, do more to maintain our health?”; link to further reflections on how health is “more than just our insides – health has to cover all parts of our life.”
“More befrienders” – suggesting that isolation/loneliness may still be a big issue for many PWLD, even the capable and involved individuals attending Seminar 2.
Key points above
“Importance of being with groups who make you happy?” – suggesting vital role of diverse support, inclusion, social groups, such as Inform Theatre and Garvald, many of which will enable PWLD to seek support, advice and companionship, and shared activities, with other PWLD.
Ideally, looking for interventions and support at a range of levels: on the one hand, “More education for professionals” – noting possible role here of theatrical work such as that provided by Inform Theatre – but also an urging to “[b]e vigilant about who is really coping: don’t assume families are coping” (a particularly important point if, with some rolling back of support mechanisms, families are increasingly asked to be the ‘front line’ of caring).
“[R]ole of ‘same’ and ‘difference’ in making friends; celebrate difference, but also what we share” (in some ways a simple but profound overall message to take away from Seminar 2, particularly when coupled to its multiple policy implications).