A week of lows and high

Last week I went to the Disability Hub meeting. A police officer from the community neighbourhood team came to speak to us about a toolkit they are in the process of creating to help raise awareness of different diversity groups within the public for the force. The police representative seemed to be well informed and aware, however when I asked him if he had the documents he passed around during the meeting in electronic format, he wasn’t sure what to answer as he had not thought about it!

On the way to the disability hub, I thought I was having a pleasant exchange with the taxi driver and was able to not feel on edge, only for him to ask at the end of the journey ‘if you don’t mind, what happened to you?’ When I refused to answer him, saying ‘no actually I do mind’, he said ‘it’s OK, I’ll pray for you’!

Wait, it even gets better!

On another taxi journey, the driver turned to my PA and said, ‘what is wrong with her?’ When my PA brushed off the question, the driver started to talk to me in a very loud voice saying, ‘ARE YOU OK LOVE?’. I cannot comprehend how people can be so patronising and not realise how rude they are being.

Last Saturday we went to see a play called ‘Dancing Bear’, a semi-autobiographical account of LGBTQ+ community and the isolation and discrimination they face on daily basis and even within their fate community in churches in modern Britain. I could see lots of parallels with the disability community – similar oppressive structures. A BSL interpreter was creatively and cleverly embedded in the play, which was fantastic. However, the audio description did not live up to expectation, and most scenes, including the key moments were left undescribed, so I was not able to follow the play fully.

The Q and A following the play was interesting and some disability issues were discussed. We have sent a feedback email to the writer and have informed her of my concerns. I am hoping that they will take the VIP’s access needs on board more for their next iteration of the show.

The highlight of this week was to see my article in print in the current issue of Disability and Society. It is important for me to tell my story of the Armenian academic trip in which I gave lectures and workshops while only relying on my wonderfully supportive parents. I hope my point was clear that it should not be down to my aging parents to provide support in that specific context rather academic mobility should be the norm for disabled researchers as it is for non-disabled scholars, and the academic community should be inclusive and accessible to all.

Some reflective time

It has been a bit of a mixed few weeks, and although there have been a few challenging events, I am happy to be able to end this blog entry with some positive and uplifting activities.  We will get there in a moment!

In our final Women for Peace session, we threw a ball around the circle and remembered all the activities we have done throughout the ten weeks.  Then we were given post-it notes of the activities to lay out on the floor in the order that we completed them.  Following this, we spent time collaging, colouring or sculpting things whilst reflecting on what we will be taking away with us from the course.  For me, the most important lesson learned is to speak out at future events and make my access needs loud and clear from the beginning rather than sitting through what proved to be an inaccessible setting for weeks. Then we were asked the same questions from session 1, including how confident we feel in challenging someone with extremist views, and how much we feel we can increase cohesion in our community.  For this, we were invited to stand in a continuum line, which for me personally was disabling as I was not able to move around like the others and share my opinions with them.  It felt like my comments from the previous week hadn’t been taken on board.

Finally, we worked as a group to think about what we might like to do next.  Individually, we had to write a letter to ourselves to be sent off to us in six months’ time, not totally accessible exercise for someone with a visual impairment (both in terms of writing and reading it)! I was relieved that I had stuck it out for ten weeks, and this was the last one, given my growing feelings of exclusion.  However, to my delight, soon after the course one of the facilitators of Women for Peace arranged to meet me to go through the course.  As we reviewed each of the activities in turn, I informed her how it was or wasn’t inclusive for me and how it could be made inclusive. It was good to discuss my concerns and hopefully make the course more accessible for the future disabled participants, but I strongly feel that our expertise should be valued, and we – as disabled people – should be paid for sharing our knowledge.  Doing anything other than this feels like the organisations, who have excluded us in the first place, are using our marginalisation to their advantage and this does not feel fair. 

As well as the meeting with Women for Peace, I attended the Neurological Users and Carers Forum (NUCF) meeting, at the Leeds Teaching Hospital.  We used to have monthly meetings but due to the ‘cuts’, our meetings are now reduced to quarterly ones.  The group used to have a consultative position and inform service users’ views on the service received, however these days, even in these quarterly meetings, it feels that the staff running the group would much rather if we didn’t turn up and that it is a hassle for them to be present in the meetings.  Plus, as a relatively new member of the forum, the staff are still not used to having me in the group, and often refer to handouts or screen and say: ‘as you can see’.  I had to stop them and ask them to read out the content of the screen once or twice.  So, all in all, like the others, I don’t feel valued but am keen to continue attending the group, because I feel it is through participating in similar groups that we can help to improve the service.  In contrast to the NUCF meeting, in the evening of the same day, I went to the Community Committee meeting held in my Leeds council ward.  I really enjoy going to these, where the councillors address the concerns of community members.  I feel inspired every time I attend these meetings and always want to be involved more in my local community.  

Another positive meeting was held for employers of personal assistants.  A few of us meet up every so often in the Centre for Integrated Living to discuss any issues and PA-related experiences with each other and with a member of staff.  I explained how I did not find the First Aid course inclusive from a disabled person’s perspective.  I was pleased to present the case for needing a First Aid course for the employers as well as Mental Health First Aid course for both employers and employees.  The group agreed with me and the CIL is going to look for trainers for delivering these courses. 

It’s good to have meetings and gatherings that uplift me.  We attended an Armenian Easter-Party for the Armenian community in Leeds and surrounding areas.  It was so lovely to see some old friends and meet new ones, a real taste of home!  For the three hours that we were there, I felt part of a loving, supportive and accepting community and it was beautiful. 

Culturally, I’ve seen a few films lately too.  We went to see Sweet Country, an Australian western, set after the First World War, about an aboriginal man accused of murder.  I found it thought provoking and there were some striking and disturbing parallels with today’s society, as well as it not having a typical Hollywood ending.  A few of us also went to see Lady Bird.  None of us had read about the film and were disappointed to find out it was a film about a teenager.  I didn’t really enjoy the film at all, it’s not my kind of thing.  I could see why there was an Oscar win for supporting actress, but I could have waited to see it on Netflix, rather than having spent money to see it!

Speaking of Netflix, I have been watching programs on energy healing, positive thinking and its links to happiness as well as a series on the nature of God, miracles and death in different religions.  These documentaries have been interesting, and I feel so privileged and grateful to be on the path of working with the healing power of energies.  In our healer Student Development group, we were taught about the basics of mindfulness and practised some guided meditations.  The techniques the workshop leader guided us through managed to completely calm and ground me and leave me in the present.  It was serene.   

Continuing that theme, today we went to the Left Bank Centre for an afternoon of reflection.  The meditation was based around an exhibition on the life cycle that was on for the Easter week in the centre, so we meditated on poems and pieces of literature about birth, youth, maturity and dying.  Having had friends and acquaintances pass away over the last few months, this meditation felt timely for me.  Going through the exhibition and the reflective space, it was good to reaffirm that death and birth are only a breath away and dying leads to rebirth and new possibilities – just as letting go of challenges and discrimination I faced earlier on lead me to more reflective and tranquil time, opening to new opportunities. 

Feeling responsible

We started the previous week’s Women for Peace session by playing a game, where in two teams we were trying to grab the pen first, by passing a message down the line.  Following the game, we discussed how easy it was to pass a message along, but we felt responsible when we had to retract a false message.  Since my hands sometimes jerk uncontrollably, I felt pressured and responsible for our group, luckily our group won! We then talked through two methods of holding difficult conversations with another person – the Dialogue Model, and I Statements.  

The Dialogue model is a useful way to address a comment that a person has made that we don’t feel comfortable with like a disablist comment/opinion. The model follows four stages of ignore, postpone, refer or dialogue in order to take us through a constructive dialogue about a topic.  The ‘I’ Statements, on the other hand, are based on a non-judgemental model, where the person simply expresses how a certain conflict has made her feel and invites the other person to have a constructive discussion.  I preferred the latter as it’s more about owning up to how one feels and taking responsibility for it instead of blaming the other.  Following this, we came up with some conflict scenarios from personal experience in small groups.  We then sat in two lines to do role plays with those topics, using our new dialogue models as tools to resolve the conflicts.  I chose to use the statement ‘You don’t look blind’ for my scenario, which is often expressed in a complimentary way, however this is not received in the same way, at least by me.  While the person role playing my scenario did not appear to realise the importance of ‘blind’ identity to my personhood, when acting out, I think the group understood the message.

In our penultimate Women for Peace session this week, we individually had to come up with four words that define peace, then as a group work together to narrow it down to only four in total.  This resulted in really interesting discussions about how we work together in an environment, which is in principle based on ‘equality’, and how we can apply the lessons learned to our everyday life.  As an ice breaker, we started this session with a game, where one person in the middle said a statement and those who identified with her should have stood up, looking for another chair to sit on.  This game clearly excluded me.  Since playing not fully inclusive games has been the norm almost every session, I was really upset that even after nine sessions things haven’t changed to become more inclusive.  I burst into tears and had to take time out.  I shared my concerns with one of the facilitators and followed it up with writing a feedback email.  While on one hand I feel it shouldn’t be down to me to educate people having felt marginalised already, on the other hand I feel responsible for making people more aware.  I am continuously surprised that most equality trainings are about race, ethnic background and religious beliefs with little attention given to disability.  I wish I wasn’t so accepting and that I was more vocal through the course; perhaps people would have then understood my views better and wouldn’t have accepted some of the non-inclusive practices that have been going on.  Being a minority even in a women’s only group, which is formed around promoting peace is not without its challenges.  I’ll be talking more about this with the facilitators at the next, and last, session.

Outside the course, I participated in a focus group with some other equality hub members about how to make Leeds city centre more accessible.  We had interesting ideas about the things we liked about Leeds and the things we didn’t like. From my perspective, I like open spaces such as Briggate and its pedestrian zone, and what I don’t like is the narrow pavements, especially when people leave their black, green and brown bins blocking the path. We also spoke of an ideal Leeds and what we would like to see.  Recommendations included more lighting and safe spaces, audio signs and information (including bus/train timetables) and wider pavements.  All in all it was a productive session for us, but much depends on how much is taken on board by the council when planning a more accessible Leeds.

We have had another lot of snow this weekend, which restricted my mobility once again.  This meant my plans to walk to the Carriageworks  Theatre to see a play had to be cancelled.  It was difficult enough to go to the relatively nearby Hyde Park Picture House to see ‘Three Billboards Outside Ebbing, Missouri’, a beautiful film depicting a woman’s trauma after losing her daughter, and her fight for justice despite being patronised and discriminated against by her own community.

For the second time, David and I went to the historical talks held in Left Bank Centre.  While the first one we went to was about the Leeds Zoo located on Cardigan Road around 1848, this one was about the Adelphi and Garden Gate pubs, located in Hunslet.  I find the talks really fascinating, shedding a wonderful light on some of the treasures in Leeds, both from Architectural and social historical perspectives.  I’m so looking forward to going to the next one.

Back to business

I seem to have let blogging slip away for a few weeks.  It was good to have a few days break and spend time with friends but that meant I had much more to catch up in the subsequent weeks. 

At the previous week’s Women for Peace session, we discussed the applications, differences and impacts of persuasion and manipulation.  For this we played ‘Break into the Circle’ to look at different (non-violent) tactics we use to join a group.  I was told for this activity I do not need to take part which I felt was ironic and exclusionary in itself, and left we wondering about the point of the exercise!  Then we took part in a continuums exercise where we were given statements to think about. These were about shopping in sales, finding a bargain, and how much we are able to resist the manipulation attempts of shops and big companies.  Afterwards we applied the differences between manipulation and persuasion in our everyday lives in our families, work places or other social interactions.  

Following this we role played as ‘Angel v Devil’; we each had a chance to play the ‘angel’, the ‘devil’, and to be the ‘listener’, using the ‘My Former Life’ film scenarios.  Although the group thought that it was easier to persuade people to take the ‘bad’ path as it sounded more exciting, for me the exercise reinforced the fact that I do not like or enjoy either manipulation or persuasion.  This might be because I have been subjected to both and know how damaging the power struggle is for the recipients.  So I wouldn’t wish to put anyone through a manipulation or persuasion scenario.  We finally thought about ways that we can resist persuasion and/or manipulation, for example, by being intuitive, informed, being able to challenge and question the ‘persuasive’ ideas presented, and listening to multiple viewpoints. Over the years, I have trained myself to be more critical and not respond reactively, however I don’t always achieve this! It’s a work in progress.

At the next session we examined the messages contained in various ‘memes’ – random images used on social media with text attached, with the intention of influencing our decisions and making us think a specific way about a point of view.  Then we watched films of Anne Choudary (from the now banned group Al-Muhajiroun), Jayda Fransen (Britain First) and Donald Trump to discuss how their words and messages have the potential to influence and persuade public opinion.  The last two especially use skilled manipulation, playing on people’s emotions of fear and anger. It made me feel really uncomfortable and I found their messages toxic. It’s such a shame that so many members of the public can be so easily persuaded by these people.

The differences and the impacts of critical thinking and impulsive thinking were then discussed in the group.  I feel as our first instinct, we all have the tendency to think impulsively, however after a fair bit of reflection, training and life experience our thinking usually becomes more critical, allowing us the benefits of making more informed decisions. 

We had lots of snow last week, which meant events were cancelled and I wasn’t able to go out for a few days.  Snow can be pretty, it makes everything bright and shiny, reflecting the light, but that’s only on an aesthetic level. Walking on snow and ice is impossible for me, and I consider snow as a key barrier in the winter, preventing me from going out, however I made the most of being home.  I finished the first draft of a chapter I am writing on challenges I face as an independent academic outside academia and how the oppression I experience has given me the impetus and strength to become an activist bringing about social change in academia.  Although the experience of writing about my difficulties was a bit depressing, at the same time I found it to be empowering and cathartic writing about the discrimination I have faced in my career as an independent researcher.  I also took the opportunity to review the revised versions of two articles I had reviewed previously.  We ended the week by going to the Left Bank Centre for an hour of reflection on Sunday.  Having the quiet time and space to meditate and reflect on the past week was restoring for the soul and refreshing for the body.

Today was the International Women’s Day and there were lots of celebrations going on in Leeds.  I do wonder though how many of these events have been inclusive of and accessible to disabled women. I also wonder whether or not there has been a recognition of the women who are not able to join in public life and especially attend today’s celebrations, be it because of mental health issues, access and attitudinal barriers, lack of support or care giving responsibilities.  Surely disabled women and their female care givers have as much entitlement to the sisterhood as their non-disabled counter-parts, and their diverse needs have to be acknowledged and respected. 

It Remains To Be Seen…

I have had a super busy two weeks and have not had time to keep up with blogging. 

I attended a working group with various stakeholders representing the taxi licensing for Amber Taxis, the main taxi firm in Leeds, to discuss different issues concerning the passengers.  The discussion revolved around topics including taxi pick up points, cross-bordering (drivers from Bradford or Sheffield for example, working in Leeds) and training for the drivers.  The members were interested to hear from the passenger group.  There were only two equality hub representatives and we were both from the disability hub.  The questions asked were mainly about disability awareness training, we were reassured that the drivers are due to receive a new set of trainings, the content of which was going to be discussed in the next working group.  Sadly neither of us was able to attend this so it remains to be seen in the third meeting whether or not the programme proposed includes effective and detailed disability training.  What was clear though was the inaccessibility of the meeting paperwork; we were handed out a large hard copy folder with lots of printed files.  I mentioned that this format was not accessible for me and asked them to send me an electronic version of the files, sharing with them my contact details.  Almost three weeks on this email has not arrived yet, even after another request send to the chair.  I am not going to attend the third meeting if the paperwork is not sent to me electronically in advance of the meeting, because I feel I have been denied equal access to the paperwork and for that reason, I see little point in my participation in the meeting.  The first meeting itself was intimidating enough; there were about 20 people present including some councillors and council officers.  The meeting was dominated by the male members and women were generally not very vocal.  It was challenging to speak out but I tried to talk about the difficulties I have faced when using taxies as clearly as I could. I am going to start documenting all the difficulties I face in future blogs, so we’ll see if anything changes!

In the last two weeks, the Women for Peace course has been very interesting and informative.  We explored ‘them’ and ‘us’ thinking, and how this narrative can be used by extremist groups to divide people, even to trigger violence.  To examine this, we looked at the 22 Factors of Vulnerability, covering engagement such as feelings of grievance or injustice, a desire for status, being at a transitional time of life; intent such as over-identification and ‘them and us’ thinking; and capability, such as knowledge and access to networks and resources. These are some of the factors that can be used to assess whether someone might be on the path to terrorism (although this in itself is by no means evidence to criminalise anyone).  This lead us to the exploration of Gordon Allport’s Nature of Prejudice Model, starting with anti-locution (negative words and comments about a group), then avoidance, then active discrimination against them (not employing people from that group), before physical violence and then ultimately extermination.  This model brought home for me far right disablist groups, who spread bigotry against disabled people and promote disability hate crime or even extermination.  The ‘us’ and ‘them’ way of thinking is relevant to disabled people’s life, where we are marginalised, excluded and not fully accommodated even in well meaning causes.  Sadly the Women for Peace group does not seem to be interested in focusing on disabled people’s oppression, despite my attempts to bring up the topic wherever I can. 

We then discussed the linear route suggested by an Iranian sociologist Moghaddam – ‘Staircase to Terrorism’ – as the path someone might take to carrying out an act of terror.  The model highlights the implications of a single story narrative, and how a person can isolate themselves into becoming trapped in that mindset.  I personally felt Moghaddam’s model was too linear and somewhat simplistic, not necessarily allowing room for the influence and interaction of multiple variables in an individual’s life.

We have also been watching ‘My Former Life’ over the last two weeks, and heard about the childhood experiences of four former extremists, ranging from psychological abuse to being bullied, how they each ended up joining an extremist group and what their turning points from those groups were.  In small groups we then looked at each of the characters, and considered how life is for them now and how much they have recovered.  I felt the turning point for all four characters was the recognition of human connectivity and the sense of our unity as human beings through the revaluation of their values, whether it was because they were overcome by a major sense of guilt or it was because they were touched by other’s kindness, words and actions.

Outside of the Women for Peace course, I attended a First Aid at Work course at the Centre for Integrated Living.  Considering I have a team of six PAs, I felt it was important to know what to do should an emergency situation arise.  The course was extremely informative and I learned a lot but it was very intense.  In terms of accessibility, I was confronted with a number of challenges.  Lots of example scenarios were very visual with little audio description; even the course handout was not fully accessible.  The one to one attention that you would expect to be given to a disabled person attending a First Aid course to demonstrate the life support techniques was lacking.  Despite all these barriers, I spent a full weekend revising for the exam, only to arrive on the Monday morning and to be told by the trainer that the head of the region had decided to award me only an attendance certificate instead of certificate of achievement, and that I did not need to take the exam. 

While at first the internalised oppression kicked in and I said ‘I understand as I am not an ideal candidate for the first aid’, I immediately knew this was discriminatory, so I started the bargaining process. I challenged the trainer on taking at least the theory test, and then expressing my desire to take the practical one as well.  He referred the request to the assessor, who was due to arrive later in the day, and while he did that, I rang David, who is on annual leave this week. I was demotivated, but determined to take the exam and David was happy to scribe the exam paper for me and also be my body buddy for the practical exam.  I dictated my answers to David and once the assessor arrived I did the practical test.  To my delight, the assessor was unsure as to why I should not receive the full certificate; she thought I performed well in both exams.  I personally felt I could have done much better if I was not made to feel excluded from the examination process in the morning and thus discouraged.  Nevertheless, I am pleased for challenging the trainer and showing that I am capable of partaking in the exam, It remains to be seen if I receive the full certificate or not, but that’s not the point. I’m also going to raise this with CIL as part of the feedback.

If all that wasn’t enough, I also participated in a weekend long workshop on the Theatre of the Oppressed (TotO) organised by Reboot the Roots and Leeds Tidal.  This school of theatre-making, using a methodology underpinned by an ethos of empowerment, offers theatre as a tool for liberation to people in all stages of life in all parts of the world.  It is a means of using theatre as a way of better understanding ourselves and how we fit into the worlds around us, and most importantly, how we might consequently change those worlds.  It is a concrete embodiment of the arts as a real instrument for social and political change.  The Theatre of the Oppressed is the remarkable invention of Augusto Boal, the Brazilian theatre-maker, theorist and activist.

We started the weekend with some specific exercises like Clay-modelling.  We arranged ourselves in two lines of sculptures and statues facing each other.  In the first round the sculptors were asked to mould their statues to objects while in the second round the sculptors were invited to mould an emotion.  Then we were divided into small groups and given the task of representing a social issue in a statue form.  Next we were told the name of a specific location in our teams and asked to display the place by using our bodies or body parts without talking to each other.  Through creative techniques such as Image Theatre, Rainbow of Desires and Forum Theatre, we explored various oppressions.

Forum theatre is one tool of the Theatre of the Oppressed for enabling people to change their world.  The objective of forum theatre is to transform passive spectators into active spect-actors through the presentation of a piece of theatre where a protagonist experiences an oppression – a situation where they fail to achieve what they want, or are prevented from doing so by the antagonists.  We used the forum theatre for the most of the weekend.  On the Saturday I volunteered to lead a group of four to perform out a disability discrimination scene.

Firstly, we presented an anti-model: a short play where I as the protagonist tried and failed to break my oppression of being ignored and excluded, sitting on my own in a group with two chairs empty either side of me, and feeling lonely. The others were sitting together and talking patronisingly about the protagonist saying things like ‘poor thing, how does she manage’.  Next, the Joker (the TotO facilitator) explained that the model will be replayed, but this time whenever the audience sees a moment the antagonists can act differently, they can shout out ‘stop!’ and once the audience member shouts stop, they are invited onstage to replace one of the antagonists and improvise their solution to the problem.  The audience tried to replace different antagonists for a few rounds but none of their attempts to include the protagonist came across as natural.  In the last round, I was asked to adopt an alternative approach as the protagonist, which I did.  Instead of just sitting there, I made the proactive effort to be involved, such as saying hello and inviting the others in the group to come sit next to me.

While the outcome was desirable and created a more inclusive environment, I felt it should not be down to me alone to put in all of the effort of making people feel comfortable, as this is something that I do most of the time.  This in its way reinforces the oppression by not addressing the root of the problem and everyone agreed. Although the participants were clued-up and informed people, they all found the exercise helpful particularly as it was a direct reflection of a disabled person’s experiences, something that they were not so exposed to.  Even though in the end we did not find an ideal solution and we did not break the oppression, I felt empowered having shared my daily disabling experiences with a receptive audience, who were willing to learn and look for solutions.  I feel TotO has a great potential of raising awareness of social justice issues and involving the community; I would love to build on what I learned last weekend and do similar scenes reflecting the oppression of disabled people as a means of education.  I remain hopeful that some opportunities will be opened in this direction.    

It has been busy but steady in the healing centre for the last two Fridays and we have welcomed some old and new visitors to our new location, however throughout these busy days, I experienced a terrible migraine. This made me very sick but I was determined to stick it out and stay for all the events as it is important for me to participate in community activities, where I have chance to be ‘me’, meet new people and learn. I’m having a slight rest this week, readying myself for the work ahead, and I’m off up to the Left Bank Centre in Leeds this afternoon for some community bonding over cake and tea! Hopefully it’s vegan!