Necessary!
A Trained "Personal Assistant" At Any Workshop Where Disabled People Attend, Anything Less Is Oppressive Thoughtlessness
Dear Harvey,
About ten years ago, in Present Time, you invited any disabled person to look upon you as his or her ally and to phone or write to you. I am taking you up on your offer because I have reached a point where I do not know if it makes sense for me to keep fighting for my place in Re-evaluation Counselling. I would like to share my thinking with you, give you some information, and perhaps get one or two things off my chest.
In and around Bristol, disabled people have organised well. We have a voice in many areas of our lives, particularly those governed by the Bristol City Council (such as public highways, transport, education, housing, leisure, etc.) and Social Services (such as home care services). We are not always heard, but we have fought for the opportunity to be consulted. We have some important organisations here: West of England Coalition of Disabled People, West of England Centre for Integrated Living, Bristol Disability Equality Forum, and the Disability Equality Advisory Review Sub-committee. We also have the Disability Advice Centre, the Disability Arts Agency, and various groups such as a disabled women's group, a disabled Lesbian and Gay group, and others which I cannot remember offhand. All but one of these organi-sations are run by committees of disabled people and staffed by disabled people. They are known as organisations of disabled people and are very different from organisations for disabled people (which are usually controlled by non-disabled people).
The West of England Coalition of Disabled People has achieved a great deal. Two of their services which have made a big difference to me are the Disability Equality Training and the Personal Assistant Register. (Seven years ago, before I became a disabled person, I trained as a personal assistant myself.) West of England Centre for Integrated Living has made a difference in the lives of many local disabled people by persuading Social Services to release money directly to disabled people so that we may employ our own personal assistants and be in complete control of this aspect of our lives, rather than having the assistance we need controlled by Social Services. All of these organisations were originally set up by a few disabled people who took a powerful stance against the oppression and demanded to be heard. As they began consulting with other disabled people, their membership grew. Disabled people in and around Bristol began to identify their needs as human beings and to make demands as to how, and by whom, these needs should be met.
Within RC, I have recently begun to ask that my needs be met in a way which best suits me. In the past I tried to 'fit in,' to 'not be a nuisance,' and to 'not make too much fuss.' I do not go to many RC events outside of Bristol because I know that when I get there I will feel excluded and isolated amongst all the non-disabled people. I will be pushed hard against all the different ways I feel like I hate myself as a disabled person. There will be no chance for me to work on the topic of the workshop and little opportunity for me to discharge the feelings which have come up for me.
At the last weekend workshop I attended, I enlisted the help of people who I know are my allies and have attention for my needs. We all worked hard towards getting my needs met, but it was not enough and it did not work. For various reasons, I became very ill. (I know that people like to make assumptions about this and put it all down to 'distress,' which does not help!) My asthma was triggered, and I had to go back to toxic drugs in order to get it under control again. Each time this happens my lungs become a little more damaged. This is irreparable damage at the present time, with our current medical understanding of asthma. Six months later my asthma is getting better, but it is still very troublesome. Asthma was not my only difficulty at the workshop. The pain from my other impairments was exacerbated, largely by people not thinking too well about me. As an example, I took a double air bed to the workshop so that I could lie down in relative comfort rather than spend all weekend in my wheelchair. Insteadof people walking around it, they walked over it, hopped on and off it, even jumped on it. Every time this happened my spine was jolted, which caused me a lot of pain. No matter how many announcements were made throughout the workshop not to do this, along with explanations of what would happen if they did, people still did it. Basically, workshops have become something of a nightmare for me.
Recently I was invited to another RC weekend workshop. After a lot of thinking and discharging I decided not to go. I could not risk my health any further. Many people are unaware that every year about 2,000 people in the United Kingdom die from asthma-people like me. As for my other impairments, I work hard, with physiotherapy, to retain the little mobility I have left, and no matter how much I want to belong and not make a fuss, it is not rational for me to put myself through a weekend of extreme pain and discomfort, and to risk losing my mobility altogether, simply because it is too hard to think about getting my needs met properly.
The biggest problem for me at the moment is that people outside of Bristol do not seem to share my understanding of what a personal assistant is.
Personal assistants are people who have undergone training in disability equality, disability politics, disability issues, etc. They have a working knowledge of the oppression. They may not have had access to discharge as we do in RC, but their training program helps them to understand how the oppression affects them as non-disabled people-which, to me, is as important as understanding how it affects disabled people. They do not go out and about in wheelchairs (this is disability awareness training, which a lot of disabled people feel is oppressive). They have been through a training program honed over the years by disabled people. They have been trained by disabled people. They are then employed by disabled people, or by organisations that are holding events which they want to make as accessible as possible.
The role of personal assistants is to facilitate the inclusion of disabled people; therefore personal assi stants do not take part in the event. Their attention is not divided. They are as important as sign language interpreters, loop systems, and accessible buildings. They are not 'helpers.' They are not 'carers.' They are skilled people who have been trained by disabled people to provide the service which we disabled people have ourselves decided is the best and least oppressive way to include us.
This is our (disabled people's) current best thinking. We have thought hard about how to best facilitate our involvement in this exclusive environment, and this is what we have come up with.
People have opposed my having a personal assistant at this upcoming workshop (unless I find the funding myself), and I have come to see this as part of the oppression. The one thing we agree upon is that we must have a goal of having in RC people who know sign language and people who have discharged enough of their distress to be able to effectively assist a disabled person. I have not yet found people who can do this. Maybe I have been 'spoiled' by having access to a personal assistant whenever I go to meetings or social events in Bristol (outside of RC). I am used to having a personal assistant respond to my requests without arguing about what would be a better/quicker/more reasonable (for them) way to do what I need to have done. I can think of many disabled people in Bristol who, if I invited them to an RC event, would not even consider it unless a personal assistant was provided.
I recently attended a one-day Regional RC workshop in Bristol. The workshop had funded a personal assistant for me. There was some misunderstanding of the function of the personal assistant, but overall this was the first workshop I have attended as a disabled person where I was assured that my needs would be met in a way which most suited me. This released my attention for the topic of the workshop, and I came away invigorated and inspired instead of exhausted and in a lot of pain. I had actually been involved in the workshop, instead of spending the whole time struggling to get some of my most basic needs met.
Having a goal of inclusion is of paramount importance, but what happens in the meantime? I have heard many reasons in this last week for why I cannot ask that workshops fund a personal assistant, should this be necessary for a disabled person to attend. Some of this discussion has inspired good thinking and pushed me to discharge some of my despair and hopelessness. Some of it has hurt me and left me feeling that the only thing I can do is leave RC and stop being such a nuisance. I have been told: 'To budget for a personal assistant would make workshops even more expensive, and they are expensive enough.' (distress about money); or 'X and Y don't ask for a personal assistant. They find people at the workshop to help them, so you don't need a personal assistant. If you want one you should pay for it.' (I'm not sure what this is about, but I am neither X nor Y, and just because they do not ask for a personal assistant does not mean it is an irrational request); or 'A sign language interpreter is a skilled person and is needed for deaf people to be able to take part. Disabled people just need help, and anyone can do that.' This last one is what has prompted me to write to you.
I agree that whatever a personal assistant does could be done by most people in RC, but my own experience has been that this is not how it works. For example, after agreeing to help me at a meal, a person will forget I am depending upon him or her and will forget to help me. I know it is distress that makes him or her forget, but the act of forgetting restimulates in me old rejections, helplessness, humiliation, and powerlessness-on top of preventing me from getting the present-time help I need. I have often missed meals at workshops because of this. I have tried many different variations on the theme of 'help' at workshops. I have written down guidelines for helping disabled people, based on the guidelines that personal assistants are issued, and insisted that these be given out with the workshop papers. However, having tried various approaches over the last five years, I now believe that a personal assistant is the most inclusive option.
Not only does the oppression imply that at best I am a nuisance and at worst I am worthless and dispensable, but my own internalised oppression believes this to be true. Acting powerfully around my inclusion in RC makes me feel so bad that I want to die. When I am supported in acting powerfully, whether my thinking is right or wrong, I discharge some of these feelings. But when I am opposed and made to fight for what I believe is right, I have to ask myself if it is worth fighting to remain within an organisation where I am opposed more often than I am supported. My day-to-day life is exhausting enough. I am being mistreated by our health care and welfare agencies, both of which I am dependent upon. Being working class somehow seems to invite these agencies to believe that I 'do not like to work and will do anything to avoid it.' To maintain a reasonable standard of living with a reasonable amount of support is a big enough struggle. I no longer have the energy to keep on struggling to retain my place in RC.
I believe implicitly in the work we are doing in RC. I believe in our theory, in our policies, and in our power to change the world. I see people changing their lives after being listened to effectively. I know I am a good counsellor. I think well about the people I counsel with and about people in general. I read RC literature and attend whatever classes I can. I am always striving to better the environment for the people who live in it. I have relationships with young people because I know I make a difference in their lives, as they do in mine. I have an enormous commitment to this project we call RC, but I fear that if I am not able to attend workshops and keep in touch with the current thinking, then no matter how strong my commitment is I will not be an effective counsellor. I will not grow as a leader. Being part of a wide-world community of disabled people which has organised well and achieved much means I have a wealth of good information to share within RC. I do not think I should be having such a struggle to share this information.
I'm not entirely sure if I am asking anything of you. I think at this point I merely want you to have the right information about the role of a personal assistant, as determined by disabled people. If this is our current best thinking, if this is what we as an oppressed group have come up with as one way to work towards ending the oppression of our group, then I believe our thinking is to be supported-not opposed. We need to get some clear policies about how we include disabled people, and we need to understand that different disabled people have different needs. I think it is wrong for non-disabled people to base what they will provide on the needs of one or two more prominent disabled people.
I believe that anyone organising a workshop should budget for a personal assistant, if one is necessary. This might mean an extra five to ten pounds added on to the workshop fee. In Bristol, most of the non-RC events in which I am interested will have automatically booked a personal assistant. (The personal assistant is booked for the event, not for an individual disabled person. In the same way that one or two signers are booked to enable deaf people to be included, one or two personal assistants are booked, depending on how many disabled people might attend.) For this upcoming RC workshop, an individual offered to pay for a personal assistant for me so that I could attend. It has been difficult trying to help people understand: (a) my reasons for turning the offer down, (b) why I do not see this offer as a step towards inclusion, and (c) that by turning it down I am not 'excluding myself' but am 'being excluded.'
None of this is about one workshop. It is about the greater goal of inclusion at all workshops. Until people in RC can take over and provide the skills of signers and personal assistants, I believe it is the responsibility of the workshop to ensure that it is inclusive. It should not be the responsibility of the disabled or deaf person to pay for his or her own inclusion, and to allow another individual to pay for it would compromise on the workshop being inclusive. I have kept asking, 'But what happens if I decide to go to another workshop next week, or to one every week, or every month? Who will I get to pay for my personal assistant?' By refusing this offer and holding out that this is about more than one workshop, I am at least pushing people to think and discharge. When they tell me that by refusing this offer I am excluding myself, it is similar to blaming me for being oppressed. Believing that it's my own fault that I am excluded releases the person from having to think. It detracts from the wider picture, which is that we all need to think about inclusion. The idea that I should let someone else pay for my inclusion ties into the misinformation perpetuated by 'charities.' Disabled people have some very clear thinking about the oppressive nature of charities. Giving money to disabled people is not a long-term solution.
I know we will not resolve this overnight, and I have a lot of work to do myself. I have made a start on this by asking someone to lead the allies in my Area, and I am trying hard to get to a gather-in of disabled people in June. I do not have all of the answers, but I would like the opportunity to be included in this world-wide liberation movement so that I can be a part of finding the answers. I am aware that merely thinking a certain way does not make it correct or rational thinking! But I've come under so many attacks lately, I wanted to go straight to the top, and to someone I knew would not attack me. Just the fact that I have access to you, and can pour all this out to you, is enough. I want to thank you for this.
Debbie Newton
St. Agnes, Bristol,
England