Guest Blog - Diary notes from a Family Carer by Linda Edwards

 By Linda Edwards,

When my daughter Rachel was first diagnosed as having a learning disability nearly 40 years ago, people we had known for many years crossed over the road to avoid speaking to us.  Although this was a painful experience, I recognised that it was their inability to know what to say and how to respond to us that made them look the other way.  What I didn’t know was how these small experiences of community exclusion in the 1970’s would follow us throughout my daughter’s life and change my own life journey.  Exclusion of vulnerable people within the “care industry” is also endemic, but this is separate issue that requires another blog post, another “alternative view.”

On Saturday 21^st July 2012, Rachel, and l, together with her support worker, participated in ‘Our Barnet - Not “One Barnet” community torch relay and parade against privatisation of services in Barnet, organised by Barnet Alliance for Public Services (BAPS).

On the way to the march and whilst having an unplanned and frustrating ‘tour’ around Finchley trying to find the BAPS bus, I explained to Rachel and her support worker that I participate because the main purpose of BAPS is to make the lives of residents in Barnet the best that it can be, and because this group does not support any one political party and, does not attempt to indoctrinate.  Being a broad and inclusive organisation, it often means supporting various campaigns that don’t necessarily affect everyone directly or immediately; but the reality is that we are all connected somehow and whilst the withdrawal of services to the elderly for instance may not affect us now, it will in years to come.  Once services have been removed, it is unlikely they will be reinstated. Once a service become privatised, and run for profit, the community will lose any accountability for which the council is currently responsible.  Research from Prof. Dexter Whitfield shows that with 25% risk of failure, the consequences for Barnet residents’ quality of life could be very grim.

Eventually we found the balloon decorated bus and Rachel and her support worker travelled with other BAPS member’s in the bus whilst I followed behind by car.  The main objective for BAPS members to have the bus was to ensure EVERYONE was able to participate in the parade.  The need to use wheelchairs, walking sticks, frames and prams created no barrier to inclusion! The bus was brill!

Unlike with Rachel’s previous service provider, I had no concern that because I was not with them, Rachel’s support worker wouldn’t speak with her.  On the contrary, Rachel’s new support service staff have developed a relationship with her by communicating through speaking, listening and responding to her with the same connection, intimacy and respect as they would with you and me.  Rachel thrives through her relationships with people.  Rachel has flourished since her new service provider took over her support in August 2011.

When we arrived at Victoria Park, Rachel and her support worker sat on the grass to eat their lunch and listen to a variety of speeches from people representing disabled people, family carers, Barnet traders, elderly people, Barnet youth, library users, a rabbi, a well known local blogger and some politicians who oppose the One Barnet Programme of privatisation. 

After the speeches we all went to Buzz Café in North Finchley to enjoy yet another lunch, wonderful weather and good company.  The real bonus for us was the bands playing music, including one BAPS member.  They had moved ad hoc to Buzz café because the council had banned the party planned by BAPS in Victoria Park.  We invited a BAPS member to join us and soon a few other people had joined our table for their lunch.  The afternoon felt like being on holiday and we extended the day with tea and cake when more people from BAPS and from the Campaign for the Destruction of Disability Support Services (CADDSS) and The Space Group (TSG) joined us throughout the afternoon. 

Whilst having lunch, the BAPS member who had been the chairperson at the previous weeks BAPS meeting said to Phillip “I have a bone to pick with you”.  Phillip pretended to look worried and jokingly asked her “What kind of bone?  Is it a thigh bone or a hip bone?”  She responded that when she had been Chairperson at the last BAPS meeting, Phillip had not kept the orderly flow of the discussion as he usually did by shouting “Order, Order” when people were speaking out of turn.  She continued that when she looked at Phillip to call “Order”, he was the person disturbing the meeting.  I added that I agreed with her and we shall have to call him “Mr Speaker” in future so that his role is clear. 

Rachel turned to me and said, “Leave my friend Phillip alone.  I am on his side.”  Silently I marvelled at her assertiveness.  Such assertiveness is not often seen in our society from people who have learning disabilities, and so it is to be encouraged and not taken for granted. Yet, this was all so natural and relaxed!  I bet you will not guess why I marvel at something so natural as a grown up woman siding with her friend against her mother…

In stark contrast, two years ago Rachel and I, together with “Mary” her support worker from the previous Supported Living Service Provider, attended a Barnet Community Fair in the park where the Mayor of Barnet was the guest of honour. 

You may remember articles where I refer to the previous Supported Living Service Provider as “bullying, lying, intimidating cowboys.”  In spite of continuous evidence and pleas, the Director of Adult Social Care and Health (ASCH) Kate Kennally continually refused to remove them.  

On that day, when Rachel and “Mary” got into the car I could clearly see that “Mary” was angry.  I kissed Rachel and in an unusually high-pitched nervous voice said “Hi ladies.  Hope we all have a fun day!”  “Mary’s” response was “I don’t know why you need me to come.  I could have stayed in Rachel’s flat.  She is your daughter and you should be with her and I shouldn’t have to come too.”  

This miserable ‘lump’ was supposed to be a role model, not bring her anger and resentment to work with my vulnerable daughter.   Instead, she had been thrust to work with my disabled daughter who is extremely sensitive to other people’s moods and feelings.  Unlike you and I, she doesn’t have the choice of who she wants to be with.  I ignored the outburst and changed the subject knowing that if I showed my upset, Rachel would react to this.  I explained that I am attending the community fair in the park in my role on behalf of the charity I work with, and as it has been selected as the Mayor’s Appeal charity, I need to be there as part of my job as well as us all having fun!   

That day turned out to be utterly exhausting for me: Throughout the day, whenever Rachel chose to do something, “Mary” wanted to do the opposite.  When Rachel wanted tea and cake, “Mary” said she wanted to go to another stall at the opposite side of the food area refusing to sit with Rachel and me.    Instead of having a support worker whose role it was to support Rachel, who by the way, was being paid via London Borough of Barnet, it felt like Rachel and I had a petulant child accompanying us for the day.  Having experienced this kind of behaviour many times over the years, I often wonder who really has the learning disability, Rachel or her support staff!  What is unforgivable is that the London Borough of Barnet Director of Social Care and Health Director Kate Kennally continually refused to remove these “cowboys” in spite of numerous complaints relating to my daughter’s safety and well being.  I wonder if she would have tolerated this sulky behaviour around her own family in the way that she forced Rachel and I to suffer!

That other day two years ago, there was no question of “Mary” and Rachel spending leisure time together as her present support staff had done throughout the day at the recent BAPS march.  I could not have invited anyone from our stall or the community to join us, as Rachel would have liked, because “Mary’s” behaviour was too unpredictable and by this time I was feeling weary of trying to keep the peace for Rachel’s sake.  You may see now the stark contrast between this day two years ago and the recent BAPS march when we invited BAPS members to join us and when more people have naturally continued to join us at our table.

That day was certainly not like being on holiday as we felt at the recent BAPS march, sitting outside Buzz Café with Barnet community residents and workers.  Two years ago on that day with miserable “Mary” I couldn’t wait to get home and once again, my feelings of guilt and impotency having to leave my vulnerable daughter alone with such a miserable and negative person left me continually unwell.

What is inclusion and what does it take to include everyone?

Inclusion is accepting everyone; building on each person’s strengths and abilities whilst addressing any difficulties or disabilities that may prevent participation, whilst offering the practical support that will enable everyone to fully participate.

The proactive act of inclusion means fighting against exclusion and all of the social diseases exclusion creates - i.e. racism, sexism, disability, etc. Fighting for inclusion also involves assuring that all support systems are available to those who need such support. Providing and maintaining support systems are a civic responsibility, not a favour. We were all born included and society will immediately improve when we honour this truth.

In the 50’s United States of America, a weary Rosa Parks, whose only reason for being excluded in society was the colour of her skin, was tired of being excluded.  She wanted social justice and to be included in society.  She dared to sit down in a bus in the section reserved for white people.  The authorities told her to go to the seats reserved for black people at the back of the bus.   She refused to move and was arrested.  The status quo was challenged and eventually change happened. By sitting down and refusing to be excluded, she stood up for inclusion for everyone!

In the UK various legislation has been introduced for society to become more inclusive and whilst people no longer openly cross over the road to avoid us, in many parts of society families with adult disabled sons and daughters experience very little real inclusion.

We play the game of inclusion because thankfully the legislation forbids us to exclude; but rarely is there sufficient ‘accommodation’ to welcome someone who cannot read or write or who struggles to follow what is being said by someone who is speaking too fast with too many unnecessarily complicated words. 

Does Inclusion mean I like everyone?  Certainly not!  Does Inclusion mean everyone must like me?  Most definitely not! Inclusion doesn’t mean that everyone must love everyone and we should all pretend we are one big happy family – that would be false and artificial.

Inclusion begins with the intention to be decent to everyone, and an openness to acknowledge and change our own behaviour when it is demeaning, even when unintentional. 

The intention to be inclusive manifests by tackling the small ways in which people are being excluded:  inaccessible venues, planning activities with only able-bodied participants in mind, and assuming everyone has the same level of literacy, speech and understanding. Addressing hearing disabilities by using amplifying technologies, sight disabilities by offering a guiding hand, accommodating mental health disabilities by accepting instability of mood or changing ability to participate as well as any emotional barriers for it, and addressing mobility issues by ensuring disabled access and remembering to find out whether wheelchair accessible toilets are available. Similarly, sticking to plain and understandable language in meetings and ensuring publicity materials are accessible in design is acting inclusively towards people who have learning disabilities.

We see inclusion through very small things.  Intention is the beginning and   conscious awareness is the next step towards building inclusive communities.

It happened at the BAPS march on 21^st July 2012 in the natural and ordinary way that included Phillip and Rachel who have been excluded most of their lives.

Thank you BAPS members and all the community who shared our Inclusive day.

Linda Edwards

Family Carer

July 2012

PS. 

I have not used names in previous articles.  It is not within my comfort zone to shame and blame.  However, as senior managers who abuse their power continue to climb their ‘professional’ ladder mainly on the backs of vulnerable people, it is now time for me to extend my comfort zone to disclose names whenever appropriate.

I hope that when these people seek employment elsewhere, their prospective employers will search to find out if vulnerable people who use the services they are responsible for mismanaging were satisfied under their regime.   As a family carer I will be very happy to provide a reference for the senior managers who betrayed my daughter, put my life on hold for many years by forcing me to make continual complaints resulting in ill health and cost Barnet rate payers many, many thousands of pounds by unnecessarily defending my complaints using expensive consultants. 

The most productive part of my reference will be that these people have not learnt anything and continue to violate vulnerable people’s lives.

And finally as a short reminder to people who are supposed to be professionals in the field, here is a short description of the values of inclusion. Whilst it may seem obvious to many readers of the Barnet Eye, sadly those who are charged with providing a care service would seem to need reminding.

------------------------------------------------------------------------------------------

   

The Values of Inclusion

Everyone is born in

We are all born as equal citizens as part of a community, we are only later excluded.

All means all

Everyone capable of breathing, even if breathing requires support, is entitled to be included. No one is too difficult, too old, too poor or too disabled to qualify.

Everyone needs to be in

If people are physically excluded, they have to be physically included. Presence is the foundation for inclusion – if you’re not there, no one will know you’re missing.

Everyone needs to be with others

Being there is necessary – but being with takes time and effort. A community is not just a locality – it is a network of connections and relationships. We have to help people be and feel part of and belong to communities, not just be lonely residents within the community or providing people with visitors to sit with them.

Everyone is ready

No one has to pass a test or meet a set of criteria to be eligible. Everyone is ready now to be part of community and it is community’s task to find ways of including them.

Everyone can learn

Even the people who don’t think they can.

Everyone needs support and some need more support than others

No one is fully independent and independence isn’t our goal. We are working towards interdependence and differing degrees and kinds of support at different times.

Everyone can communicate

Just because someone can’t or won’t use words to communicate doesn’t mean that they don’t have anything to say – everyone can communicate and we have to work harder at hearing, seeing, understanding, and feeling what people are communicating to us and communicating back.

Everyone can contribute

Each person has their own gifts and strengths – and each person has a unique contribution to make. Our task is to recognise, encourage and value each person’s contribution including our own!

Together we are better

We do not believe the world would be a better place if everyone is the same. We are not dreaming of a world when all differences are eradicated and all disabilities are cured – we believe that diversity brings strength and that we can all learn and grow by knowing one another.  

Marsha Forest and Jack Pearpoint

-------------------------------

Linda Edwards is a regular guest blogger at the Barnet Eye and is a carer and Barnet resident. Guest blogs are always welcome at the Barnet Eye