‘There’s something SPECTACULAR about seeing a place,experiencing a different culture, being exposed to new ideas’ Barack Obama

If you’ve been to St Annes you’ll know that I’m not referring to the town, but instead it’s a reflection of the past weeks, from the comfort of  my home.

This opportunity has indeed been spectacular, because of its reach, in terms of depth, breadth and length, but mostly because of the magnificent people I’ve met. It hasn’t just been the project hosts either, though they have been amazing, it’s the taxi drivers, museum attendants, free tour guides ,restaurant staff , hotel receptionists, airbnb hosts who through every day chat have been great sources of insight into the issues within their local communities.

I am reminded of a visit to the Ukranian Museum in Calgary, ostensibly a touristy distraction, where I learned about the hardships endured by Ukranian emigrants to Canada and their internment during the 2nd World War. I had never heard this horrific story of people losing their homes, land and freedom, due to national fear about their Austrian connections. This quote was displayed amongst the exhibits:

There are parallels here with the institutional experiences of people with learning disability and their families, in the past and today, as well as with the injustices that people are enduring in their attempts to develop and maintain relationships, right now.
This is hidden information, that most citizens are unaware of. It is the reason for campaigning through the U-Night Group and Supported Loving and why national media reports, like Jayne McCubbin’s recent feature for BBC Breakfast, are so important.

Similarly, I found that there was much to learn from considering the fascinating history of the First Nations people, who have also been terribly marginalised and oppressed and are now trying to rebuild their identity and culture.

I was particularly fascinated by their perspective on wellness, with the emphasis on relationships and inclusion, as a binding force:

The last stop during my visit, entailed a five hour bus trip there and back, but it was worth every second of that inconvenience. Kelowna was probably the most beautiful place on the journey. It was the Lake District magnified and more lush, with a Californian climate and almost as many wineries.

Apart from the scenery, my host for the day, Margaret Newbury-Jones was magnificent.
She is a sex educator and therapist, specialising in developmental disability and we found that we had a great deal in common. Not only did she share some of her  brilliant teaching resources with me, but we were able to exchange ideas and experiences about involvement in group and 1:1 sessions.

This is Rachelle and Margaret
She also arranged for me to meet with Rachelle Hole, at the University of British Columbia. Rachelle is the Co-Director of the Centre for Inclusion and Citizenship, where y she has led a community-based participatory theatre project focused on improving sexual health knowledge and positive sexuality among self advocates. I was able to watch some of the impressive footage from their ‘Rights, Relationships and Responsibilities’ drama production.

Another stop, before Margaret treated me to lunch at White Spot, a traditional British Columbia restaurant, was at the Developmental Disability and Mental Health Service, where I met Social Worker, Kirsten Charles. Yes, this is a multidisciplinary team that just works with adults who have a dual diagnosis, which is almost unheard of in the UK. I listened to her, with envy, talking about her work that cuts across boundaries and avoids  professional conflict. Inevitably, a key element of this intervention is about relationships and sexuality. I was particularly interested in the group work sessions she is currently running, using dialectical behaviour therapy approaches.

I also got the chance to visit an art  exhibition at the University organised by Cool Arts, who are dedicated to providing fine arts opportunities for adults with developmental disabilities. Whilst the theme was ‘Layers’, not sex and relationships, I was impressed by the quality of the work and its inclusive placement, within a University setting.

So, by contrast to being whisked around Kelowna and hopping on and off Greyhound buses, life in St Annes is quite unspectacular. It’s now about catching up with family, friends and colleagues and getting down to the business of writing the fellowship report.

Given all the information and ideas that I have collected, it will be no mean feat to crystallise my thoughts into a concise, manageable document. There will be hair pulling, copious amounts of coffee, procrastinating washing machine filing and the odd glass of Prosecco along the way, but I do hope to be able to share the final report with my wonderful hosts and interested parties in the UK, by the beginning of March, next year.

In the meantime,if anyone is interested in the whole or part of anything  that I have been exploring and wants to know more, please do not hesitate to contact me via email-sueamberco@aol.com

 

Vancouver is indeed versatile;a vibrant city, with expansive countryside nearby, in addition to mountain peaks and sandy beaches.This seems to be reflected in the people, who are probably more laid back and flexible than anywhere else that I have visited.

In turn, this atmosphere has been echoed in the services and people that I have met.

This is Aaron Johannes and Barb Goode, with whom I got to spend an inspiring morning. I listened in awe to Barb’s remarkable story of  leadership in the advocacy movement. Barb was one of the key people involved in the ‘Eve Case’, which people in the UK may not be familiar with, but we are very  familiar with the issues that it raised.

Barb and her friends were national leaders in the Canadian self advocacy movement in the 1980’s. They heard about the case of ‘Eve’, whose mother wanted her to be sterilised, to avoid an unwanted pregnancy. Barb explained that she thought this was unfair and that Eve should be able to make her own decisions. She managed to get the Canadian Association for Community Living and lawyers to represent this view to the Supreme Court, who ruled that people cannot be sterilized without their consent, unless there is a good medical reason for this to happen. You can read more about this amazing achievement at https://cic.arts.ubc.ca/resources/the-eve-decision-1986/4641-2/I
I was thrilled to be given a copy of the book outlining Barb’s life story, which has continued to be about activism and disability rights.Given the enormity of everything that she has done in her life, Barb was modest and unpretentious, with a thoughtful, considered approach to my questions. I’m sure she got fed up of my response being ‘wow’ to most of what she said.

Whilst Aaron is also an inspiring researcher, academic, educator,deep thinker, plan facilitator and artist, he will not mind me saying that he was over shadowed by Barb’s natural charm and positivity.  See https://imagineacircle.com/ for details of the fantastic work that Aaron is doing now.

The hand of friendship and warmth was further extended to me when Linh Pham from Burnaby Association for Community Inclusion invited me to an evening get together to meet her Community Connector colleagues.It was great to talk to this young, dynamic, cosmopolitan group (including someone from Cambridge)  who are using asset based approaches to connect people to activities in their local communities, in order to forge sustainable, meaningful relationships.They also support Let’s get Real, which is a ‘community of people with diverse-abilities who meet on a monthly basis to make new friends, explore relationships, and have fun! I am attending the group advertised below on Wednesday and really looking forward to seeing how it compares to the many social events that I have helped to organise over the years.

I’ll be back soon, with more vibes from Vancouver………

Apologies for the delayed post about Calgary. It’s been ‘all go’ since my last blog, however we have left the snow behind for the warmer climes of Vancouver and my daughter Zara, has joined us for the last leg of the journey, which has been a very welcome addition.

But, back to snowy Calgary……so,so glad that I went there, as I met such interesting people. The theme that shone out of each encounter was cooperation. They were all amazing examples of organisations getting together because they believe that people with learning disabilities have a right to universal services and support.

Both Wendi at TASCC (Alberta Sexual Health) and Diane from the Centre for Sexual  Health showed how sexual health services for young people and adults had embraced a culture of inclusivity, by adapting materials and approaches to meet all consumers needs. They also both recognised the importance of supporting all stakeholders, particularly paid supporters and family members, for training to have the desired impact. I am grateful to them for sharing their research, resources and rich reservoir of knowledge. Check out http://www.jimjacksonanatomymodels.com for the most life like teaching models. (Please note:contains sexually explicit images) They are very expensive, but much better than most things I have seen in the UK-even our Jack!
This is Wendi from Alberta Sexual Health: I was fortunate to also meet with a group from Right2Love, which is an advocacy project managed by Calgary Scope. They are, as the title suggests, a rights based group who have been raising awareness about and campaigning for the rights of people with disabilities to have relationships. They showed me some of the amazing illustrative videos that they have made and also talked about the work that they have done in persuading decision makers about the importance of relationships. It is sexual self advocacy in action and at its best. Seehttp://www.actionhall.ca/2010/07/what-is-right-to-love-group.html

 

 

 

We did poster work about their achievements and hopes for the future. Colleen, who supports the group, described our discussion as ‘Right 2 Love meets Supported Loving’, as coincidentally, Claire, Supported Loving’s founder had made contact with them a few weeks previously.

 

You may be wondering why I haven’t done a video blog for a while and some of you who know me (too) well might think its linked to the state of my hair. Well, just to show that I haven’t abandon the vlog completely here’s one that I did yesterday for the NW Association of Churchill Fellows:

 

As you can see I’m now in Vancouver, having crossed the mountains for  milder  British Columbia. This was the view of the snow capped Rockies from our plane window. Very spectacular!
Unbelievably, I am heading for the last leg of the journey, that has taken me across contrasting terrains and varied climates.
Partly, I do not want this experience to end, but I’m also keen to start distilling the information into a number of work streams that will have meaning for friends and colleagues back home.

More soon about Versatile Vancouver………….

 

Going from warmth and sunshine to blizzard conditions is a bit of a shock to the system! After a six hour delay due to severe weather conditions, I finally made it to Calgary, where it was snowing very hard. This would have been lovely had it been Christmas Day, but not when you have an ill prepared wardrobe and meetings to attend. However, I managed to buy a cheap pair of gloves and took advice to pile on the layers.

I have learned that services and systems in Canada are as diverse as the weather. Each Province is governed separately, which means that they have different approaches and legal frameworks. This can range, for example, from a fully integrated school system to the existence of ‘special schools’ and various models in between.

So, I have moved from liberal Saskatchewan to Conservative Alberta and am now trying to get my head around yet another service system.

The only thing that I knew about Calgary previously was that they have a stampede, a bit like a rodeo and it’s the gateway to the Rockies. Oh and I also knew that some people were working on innovative training approaches, which was what brought me here.

Before moving on to thoughts of Calgary,  I just wanted to dwell a little on a surprising emerging perspective that is coming out of my visits. This particularly relates to direct service provision and the suggestion that there are certain setting conditions that need to be in place in order for the provision of support for relationships and sexuality to prosper. Many people, including myself, have recounted frustration, when training  provided for self advocates or staff does not produce the expected changes in opportunity and approach. Even worse, we know that there are  environments in which vulnerable people continue to feel unsafe and experience  sexual abuse, despite the move to focus more on teaching about healthy relationships.

Organisations like, COR and SAI in Saskatchewan, Montage in Ontario and Impact: Ability in Boston, as well as others that I have visited and researched, appear to have taken a  systemic approach to this issue, creating a community of safety for self advocates, family members and staff, in which the needs of the whole person, including their sexuality, are addressed. This includes creating an open, discursive, rights based fertile ground in which  the seeds of training can  flourish. Some of this thinking comes from management theory and person centred approaches, overlaid with trauma informed support and gentle teaching. At this stage, I admit to this being a swirling maelstrom of thoughts, which I hope will have crystallised by the time I need to write the final report or provide verbal feedback.

Not withstanding that the evidence from the agency examples I have seen  are incredibly encouraging in terms of the impact arising from having a multi-layered approach to encouraging and supporting intimate partner relationships for young people and adults with a learning disability.

I have been asking all my hosts for a message to send back to colleagues doing similar work in the UK. They have mostly been of  a similar nature reflecting encouragement to carry on the good work, under pressure-‘keep on, keeping on’ or reflective of solidarity across the pond-‘we share your concerns and aspirations’. It is so good to know that despite all the divisions in the world, there is a global community of people interested in improving the sexual well being of people with a learning disability.

More about Calgary in the next blog…………….

Saskatoon is the largest city in the central prairie province of Saskatchewen, which more than 50 years ago in ‘A’ level Geography lessons I laboriously learned is the ‘bread basket’ of Canada, if not the world. These days it’s also known for being a global leader in potash and uranium export.

But, I had come to meet people engaged in innovative social care practices…..and I certainly was not disappointed.

At the University of Saskathchewen I first met with Lee Murray, a nursing educator, who has developed a series of training programmes for young people with learning disability based on using puppetry and story boards.

These resources are designed to teach  healthy peer relationships and safe environments. Lee has found that young people interact positively with the puppets, who have been modelled to reflect the local culturally diverse and the disabled population. She also explained that there have been instances of sexual abuse disclosure addressed to a puppet, rather than an adult teacher.
The training is provided, interestingly, mainly in the local Catholic School system, in group settings, but is also suitable for 1:1 sessions. Lee has been aided by nursing students on placement, in rolling out the programme, over the last 10 years.

The design, review and implementation of the materials has been a collaborative effort, using what they term a ‘Meitheal’-an old Irish word that describes a gathering that brings people together to support one another. I was lucky enough to meet some of the participants, as well as Social Work, Psychology and Nurse students on placement with the various agencies.
Our discussion focussed on how Lee had managed to bring these local groups together  and sustain their commitment over many years. I was impressed by their willingness to share ideas and to work together for a common good.

This equally shone out in my next encounters, which were with representatives from two provider organisation-Creative Options Regina(COR) and Saskatchewan Alternative Initiatives.Michael Lavis from COR has worked with the local Sexual Health, Advocacy service and others to develop an excellent sexual health programme, that is now freely available to providers across the Province.

In many ways, the issue that was more enlightening was the ethos behind the services run by Michael, along with partners from SAI. These are firmly rooted at all levels of the organisations in theories of gentle teaching and trauma informed support.
The culture developed appears to create synergy with, and welcoming of, openness to sexual discussion and education. This is an emerging theme from discussions at every level in various agencies; that it is necessary to create organisational environments that are safe and nurturing for people supported and those providing support, in order for sexuality issues to be embraced. On another level, I welcome opportunities to continue thinking with colleagues in the UK about the relevance of trauma informed approaches and gentle teaching to the development of a more humane service system, with the potential assistance of new found friends from Canada, who are world leaders in this field. Please contact me (on sueamberco@aol.com) if you are interested  in dialogue or are already using these approaches.

Look what I found on my Montreal travels-the Sir Winston Churchill pub!

Lots of Churchill pictures, memorabilia and information inside. Obviously I had to pay homage.

And it would have been rude not to have the Churchill cocktail-my glass was raised in honour and appreciation.

Hallelujah! Guess who was starring down from across the road. Montreal’s songster and poet, the late, great Leonard Cohen. His words: ‘There is a crack in everything. That’s how the light get’s in’ (Anthem) is a reminder that however difficult change might seem, there is always a glimmer of hope for the future. I will certainly take this sentiment forward into the project implementation period.

Attached is an emotional vlog, which probably needs some context in order to understand the ramblings. I’m in Montreal, a beautiful cosmopolitan, Francophile city.

I’ve always wanted to visit here, because both my Dad and my Uncle attended one of it’s main Universities-McGill. They grew up in Jamaica. First generation intellectuals, slavery only two generations away. Their parents with high aspirations of the ‘dominion’ supporting them to better things.

So, I tramped the streets that my Dad would have walked on in 1948 and stood in front of the building where he would have been admitted. I thought about how a young black man from a  colourful Caribbean island would have felt arriving in a more subdued European dominated country.

I was really struck by his spirit of adventure and how actually he was the embodiment of  the Churchill Fellowship philosophy of ‘travel to learn-return to inspire’, as after McGill, he trained in London and returned to contribute to the building of an independent Jamaica.

The cultural challenges he must have experienced vastly overshadow any I have faced on this memorable journey and I am now able to view his, with pride and admiration.

The fellowship is about discovery, on all levels. This short detour into self discovery has been soul-stirring, but such a positive stop, for which I am immensely grateful.

Phew! The three day training programme led by Katherine McLaughlin is over, but the ideas are still swimming around my head. It was amazing to be able to share the learning experience with a very diverse group of people from all across the USA, from Indiana to Florida, New Jersey to New England. There were researchers, Occupational Therapists, Parents, company owners, educators, direct support workers and sexual health professionals and probably some that I’ve forgotten. They had a wide and varied span of experience and opinion. It was interesting, for instance, to learn about the extreme restrictions on sex education content in the ‘bible belt’ states.

Katherine McLaughlin is an inspiring trainer, who well deserves her reputation as one of the foremost sex, relationships and intellectual disability trainers in the U.S. Her materials, which  are accessible, comprehensive and evidence informed, were delivered in an interactive style. The last session, involved each person providing a short lesson, from the curriculum, to a small group. Mine was on the difference between public and private spaces. As you can see, I was missing my usual visual toolbox, so had to quickly improvise.

Katherine’s work can be viewed  at her website:
http://www.elevatustraining.com,  where there are free materials and excellent articles. Some of the content does require translation for the UK context, which I am hoping to assist with in due course.

The most exciting aspect of the curriculum, for me, is the  part that focuses on parents needs, which is based on a really interesting theoretical framework.
It will be great to develop and utilise these resources, particularly using the model of  parent trainers.

I also particularly liked the sections on supporting behaviours, especially using ‘trauma informed approaches’. I am aware that such approaches are being employed in children’s services in the UK, but remain less common in adult social care services. I’m finding that both in the US and Canada practices are much more sensitives to the negative and harmful experiences  that many adults with a learning disability have experienced throughout their lives.

Thursday was a day off, supposedly. A beautiful sunny day and an opportunity to visit Cambridge and Harvard University. Unfortunately, I had no success in trying to find a contact there. We enjoyed a very interesting tour by a current student, who  explained about the eye watering $70,000 a year all in fees!

In one of the many bookshops, I found this book about JFK’s sister, who I’m sure many of you know had a learning disability and was sent to an institution by their father, partly due to social embarrassment. His other sister and  subsequent family members, took compensatory measures, setting up the Special Olympics movement and funding national research aimed at improving the quality of life for people with intellectual disabilities and their families. This is based at the Eunice Kennedy Shriver Center at University of Massachusetts Medical School (shriver.umassmed.edu). Some of the services I have visited have been the subject of research here. So, the rest of the day was given over to background reading about the excellent work being carried out at the Shriver Center!

In front of the statue of John Harvard

 

 

 

 

 

I am now staying just outside Boston, famed for it’s tea party, the home town of my childhood hero JFK (don’t ask why) and being more Irish than Ireland.

On Wednesday I had the pleasure of attending the Massachusetts Developmental  Disability Sex Educators Forum meeting. This was a lively, enthusiastic group, who were as interested in hearing about our experiences in the UK as they were in telling me what works for them. Fortunately, I had a prepared presentation, which seemed to be well received.

One of the most striking aspects of this group was the scope of its membership. There were regulators ( the equivalent of our CQC Inspectors), Case Managers (similar to Social Workers), Commissioners, Contract Managers, Service Providers and a mainstream Sexual Health Worker, all involved in training and talking passionately about the need to spread the word. It would be fantastic for us to achieve this kind of mix, rather than the predominance of service providers and training agencies that currently exists.

I cannot let mention of today pass by without reference to the BBC Breakfast broadcast, featuring  the Lancashire Friends and Relationships Group, the Meet-n-Match date night and Supported Loving. So proud to have been involved in this and to see our campaign aired on prime time TV. I haven’t managed to pick up on all the comments, but I gather that it has had an impact and raised awareness of the importance of loving relationships for people with a learning disability, which is exactly what we were hoping for. The link is here, in case you haven’t seen it: https://www.facebook.com/bbcbreakfast/videos/413803989261240/