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When law is not enough
This year marks the anniversaries of two landmark pieces of disability legislation.
In Britain, it’s 40 years since the passing of the Chronically Sick and Disabled Persons Act – usually known by the name of its sponsor, Alf (now Lord) Morris. Across the Atlantic it’s 20 years since the Americans with Disabilities Act got on to the statute book.
Both events are noted in this issue. Phil Friend reflects on step changes which occurred following the passing of the Morris Act while acknowledging that much still remains to be done; in Worldview we’ve an open letter from US direct action group ADAPT, lamenting the fact that many of the benefits which have devolved to disabled Americans still have little relevance to those of their compatriots who remain incarcerated in residential institutions instead of receiving proper and appropriate support to live in the community.
Meanwhile, in his regular column, Peter White ponders whether things, in particular, discriminatory or prejudiced attitudes, have been changed that much by the passing of anti-discrimination laws.
What’s the value, for instance, of more accessible buses if disabled passengers, now more able and likely to use them, are still subject to hate-speech and abuse while travelling?
What difference does better access to shops make if disabled customers who enter them continue to be patronised or ignored by staff?
What price can we put on successive governments’ commitments to bringing in new laws when they continue to fail to address the issue of the inaccessibility and inequality of the electoral system by which they came to office?
The Disability Discrimination Act cannot be dismissed out of hand, but its worth has to be questioned as long as the party which passed it into law continues to medicalise disability and not only perpetuates, but feeds the myth that too many of us are benefit scroungers.
Law is not enough
Posted by
Inva
at
07 Sep 10 12:44
And with tighter restrictions being imposed on the right to legal aid such breaches of a Disability Discrimination Act which was already far less than what was needed to protect rights will continue without being challenged. Is it any wonder that we have so little protection.
On the BBC news last night people were supporting even more cuts (but only the cuts that didn't affect their own lives) whilst in France today people are out on the streets fighting against proposals to raise retirement age from 60 to 62 when our right to retire at all is being ripped away from us.
You only get the get the government you deserve, and you only get the society you're prepared to accept. Here you have people more concerned with who wins Big Brother than what their rights are.
On the BBC news last night people were supporting even more cuts (but only the cuts that didn't affect their own lives) whilst in France today people are out on the streets fighting against proposals to raise retirement age from 60 to 62 when our right to retire at all is being ripped away from us.
You only get the get the government you deserve, and you only get the society you're prepared to accept. Here you have people more concerned with who wins Big Brother than what their rights are.
Discrimination and Accessibility.
Posted by
Anonymouse
at
08 Sep 10 19:21
My worst experience of discrimination has come from my own Local Council and ultimately my Government.
It brings a new concept and meaning to the word "accessibility" when the law that was meant to protect me from discrimination is not in itself "Accessible".
No the law is not enough.
And I don't expect things to get any better.
I expect them to get worse.
Anonymouse
It brings a new concept and meaning to the word "accessibility" when the law that was meant to protect me from discrimination is not in itself "Accessible".
No the law is not enough.
And I don't expect things to get any better.
I expect them to get worse.
Anonymouse
UK ME Patient Charity Action for ME refuses to take disability issues seriously
Posted by
Ciaran Farrell
at
26 Sep 10 16:29
May be Reposted
UK ME patient charity Action for ME conference on “Work, welfare benefits and M.E – is anyone listening?”
Disability Access Report
By
Ciaran Farrell
Verdict : It was ghastly : Action for ME and most particularly its CEO & legal firm Allen & Overy have a lot to learn about ME, ME Awareness and Disability Awareness.
1 Introduction
AfME obtained over £500,000 of public money via a grant from the UK Lotteries Board, the Big Lottery Fund to carry out biopsychosocial type research through AfME’s National ME Observatory including an epidemiological study.
AfME’s conference on the 25th of September was for the Observatory to report back to AfME’s members who are the beneficiaries of the Observatory’s work as far as the Big Lottery Fund are concerned on the research that has
been carried out by the Observatory on behalf of AfME members.
AfME do not want to hold this meeting, they have to in order to for fill the terms of their Lottery Grant.
AfME originally planned not to have any ordinary members of AfME on the Observatory’s Steering or Reference Committees, but were told by the Lotteries board that if they did not do so, then they would not be able to obtain any grant money from the Lotteries Board. AfME hastily set up the required committees in order to meet the Lotteries Board’s terms, but they quickly reduced the status of the committees concerned to talking shops, and then side-lined and ignored them. Any members of these committees that objected to this were brow beaten into silence and or simply removed. AfME “took the management of the Observatory back in-house” thus rendering the committees concerned completely tokenistic.
Neither of these two committees or the people who made them up were in any way evident at the conference and they were conspicuous by their absence. A very small number of the individuals who had served on these committees attended the conference as individuals and not as members of the committees concerned.
UK charity law is a complex area within which Action for ME, AfME has sought to use what could best be described as linguistic gymnastics to deny members of Action for ME, AfME the right to attend meetings or to speak at those meetings or to vote on policy matters and also most critically to elect a Board of Trustees who would be representative of the membership of AfME.
Anyone who takes out a membership subscription to a charitable company for the purpose of becoming a member of that charitable company and who pays a membership fee for their membership and who is accepted as a member of that charity company is logically and legally a member of that charity and also a member of that company.
Action for ME is a charity and it is a company limited by guarantee and having no share capital. This legal type of company is one of the very few that can be registered as a charity under UK law.
AfME was founded under the Companies Act 1985 and AfME’s constitution, its Memoranda and Articles of Association, even the new ones that AfME did not tell, us, are Company Law documents.
This can clearly be seen as the start of the old and new Articles begins with a set of definitions as laid out by the Companies Act 1985 in the case of AfME’s old Articles and the Companies Act 1985 and 2006 in the case of the new Articles. The Memoranda also carry banners and headings referring to the Companies Acts.
Therefore the Articles, old, new or whatever are a Company law document which relies on the Companies Acts for its legal authority as would be expected for a governing document of a company limited by guarantee and with
no share capital which are the type of companies that could be registered as charities in the mid-1980s due to enabling legislation passed by Mrs Thatcher’s Government.
It naturally follows from this that the definition of members and membership that are defined in such a document would define a member in terms of Company Law ; Therefore a person who is member of the charity Action for ME is a member of the company Action for ME as the two are one and the same thing.
AfME’s claim that members of the charity Action for ME are not able to attend General Meetings, or to speak or to vote, or to elect a Board of Trustees because members of the charity are not members of the company Action for ME is untrue, false, illogical and has been used as an illegal instrument to deny AfME’s members the legal and democratic rights that we are entitled to.
2 The legal status of the AfME meeting scheduled for the 25th of September
There are only two kinds of meetings that are defined in AfME’s new Memoranda & Articles of Association, which is its constitution, Board of Trustees Meetings, and General Meetings. AfME cannot constitutionally hold a style or type of meeting that is not either one of these two alternative as to do so is to act in an unconstitutional and therefore illegal way.
AfME’s meeting of the 25th of September has been billed by AfME as a “Public Meeting” and it is to be presided over by AfME’s CEO and not the Chair of the Board of Trustees. AfME have sent out publicity for this meeting on the basis that it is open to all AfME members. Therefore it is not a closed meeting of the Board of Trustees.
This means that logically under the provisions of AfME’s new Articles of Association there can be only one other type of meeting that AfME can hold, a General Meeting.
Given AfME’s history of denying AfME members a voice, a vote and the ability to elect a Board of Trustees, it is my view that AfME have sought to prevent AfME members from raising legitimate concerns, policy issues and grievances about the unconstitutional and undemocratic way in which AfME is run which members are fully legally entitled to do at General Meetings by unconstitutionally and illegally redesigning a General Meeting as a non-General Meeting.
3 Disability issues
I was right to have previously raised serious concerns about the disability access for this conference which was held at the offices of Allen & Overy at 1 Bishop’s Square, as can be seen from previous postings on the matter. No one from AfME got into touch with me about the disability issues I had raised, so I was therefore obliged to contact AfME. Their response was that there was not a problem and everything was Ok and well under control.
The reality fell a very long way short of the glib assurances and reassurances which I received on the matter as I was not permitted to speak to anyone in authority at AfME. I spoke to staff over the ‘phone and they took messages and then expected me to be grateful when they had actually managed to contact a person within the organisation that was supposed to know something about the conference and how it was being organised, so they could relay to me their messages to me without questions, queries or comment.
Access to the building for people in wheelchairs roles as I correctly thought round the back, but no arrangements had been made for AfME to tell anybody about this, due to the complete and utter lack of disability awareness within Action for ME.
There are other problems, the main entrance to the building is controlled by two very large motorised revolving doors. These caused a lot of problems myself and other people because you must walk through them at a pace dictated by the movement of the doors themselves. There was an alternative thought that could have been used, but nobody told anyone about it.
There was then an automatic electronic check in style of security gate, like the ones found on the Underground which staff would use to pass through the barriers. Visitors were required to report to reception, but being Saturday the reception point was not either properly or adequately staffed, will start at all. This meant that people had to queue and to try and find someone so that they could get through the security barriers.
The set of rooms were the conference was being held was located in the basement.
The route from the main entrance to the rooms in the basement was tortuous and involved negotiating a number of extremely heavy doors, which caused absolute havoc for myself and others who have mobility problems.
Most people were expected to use the stairs, not the lifts.
There was only one small lift that was available which take people from the ground floor level into the basement, able to take a wheelchair and about three or four people at the very most.
There are no shortage of lifts, on the way through the building I noticed a large bank of lifts, but then it will shut down because it was Saturday!
There are further access problems in relation to the rooms used to the conference and toilet facilities as these were only accessible through very large and heavy fire doors which caused a problem to myself and a number of other people have not negotiable by anyone in a wheelchair except with the assistance of at least one other person.
I raised these issues and the issue of signage and a lack of help from staff from both the venue and from AfME with AfME’s CEO. I put to him that things would have been a lot easier had the proper information being available to people so they would know who to approach have helpfully required, and they would also have known what to do in order to use the relevant facilities to enter the building, and negotiate their way to the conference rooms.
There was confusion over the role of the staff that were in the venue as they either were also themselves as purely catering staff and had no role other than to supervise the dispensing of tea or coffee and biscuits.
This extended to their manager who said she was a catering manager and the building manager and that if I had any complaints I was taken up with a senior partner at Alan Overy, Mr Richard Evans.
I explained to this person that Mr Evans is a Trustee of Action for ME, and as such was unelected, unaccountable and non-contactable by members of Action for ME.
The response was you either like it or lump it. The individual concerned refused to render assistance to myself and others on the basis that she had to supervise the catering arrangements and neither she nor her staff could or should be “ diverted” or “ distracted” or “ prevented from” carrying out their catering duties, whilst insisting that there was no problem whatsoever because she and her staff would do everything in their power to assist sick and disabled people.
The individual concerned also refused to temporarily wedge back the heavy doors, including some fire doors so that people could get access to the conference rooms and to the toilets, on the basis that this would be a fire hazard.
She informed me that she had fire wardens monitoring the doors, so I said those people should be opening the doors of people, and they are not.
I said to her that those fire wardens could equally well monitor the doors in an open wedged back position, and if there was a threat of a fire then they could take further action required, such as closing the fire doors, or evacuating the building which would require the doors to be wedged in order to efficiently ensure that a large number of disabled people could pass through them.
She was not prepared to discuss the matter further, and told me in no uncertain terms that she did not have to allow disabled people into her building, because they were a fire hazard.
Therefore we were very lucky to be allowed to have conference in the building at all, which was all thanks to Mr Evans.
I was previously informed by AfME that there was for disability access to the building because a member of Alan Overy's staff, possibly Mr Evans himself or someone acting under his instructions, had “ walked the route” although AfME never made it clear what route they were referring to because they refused to specify the starting point and destination of this so-called route.
I attempted to bring these salient facts to the attention of AfME’s CEO, but frankly, he did not have time to listen to me, and nor did he want to listen to me, and he told me so.
While he wanted to do was to tell me I should not be so critical, and that he and his staff had worked very, very, very, hard, and that basically eyeing everybody else should be exceedingly grateful to him and Action for ME.
Since I was not able to get these salient facts through to AfME’s CEO, I had to be content to tell him it was not a question of simply working harder, one had to work more intelligently, and in order to do this it was necessary to listen to disabled people, about disability access.
The subject of disability access to this venue has now become taboo as far as AfME’s CEO is concerned, which shows that both AfME, its CEO, and its Broad of Trustees and especially Mr Evans have a great deal to learn about disability, disability access and I would remind them all of the provisions of the UK Disability Discrimination Act, has quite obviously in adequate arrangements were made for disability access, and this is a failure under the legislation to make proper all reasonable accommodation for people with disabilities.
I would also like to point out that neither myself, or any other disabled person, and especially wheelchair users should not be regarded as fire hazards in order to dismiss our needs as disabled people.
I would also like to point out that because AfME’s CEO refused to allow me to point out to him the above facts and their significance, because he refused to listen, and he refused to take either the issues will mean seriously, because he refused to take his management role seriously as the organiser of the conference, I am publicly calling both him, and Action for ME to account through this Facebook site.
Since AfME have planned another meeting in this venue, I call upon AfME’s CEO, and its company secretary, Mr Evans to contact me as a matter of priority so that these issues can be resolved.
One final point, I have left a number of messages for AfME’s CEO to contact me on a number of issues, and he has not responded to any of them, therefore I do not consider it to be appropriate simply to leave more messages that he and AfME will ignore.
Therefore, I consider that making this matter public via the Internet is a fair and reasonable step to take in the circumstances.
4 Conclusions
Under the terms of the UK Disability Discrimination Act one can take legal action against an organisation that has failed to make what is described as “a reasonable adjustment” to accommodate a disabled person’s disability needs when a disabled person informs the organisation of their disability needs.
It was clear from my encounters with AfME’ CEO, his staff and those of the venue, that they considered themselves under pressure, and the CEO in particular, who simply wanted me to see things from his point of view and was not prepared to see things from a disability friendly point of view.
Despite the fact that AfME’s CEO took the point that it is not simply a matter of working harder, because one has to work more intelligently in order to know and understand the needs of disabled people, he was determined that I should only see matters in a positive light.
He therefore case what I was saying away as being “negative”, “critical” and time consuming.
I would point out to AfME’s CEO and Board of Trustees, and to Mr. Evans in particular that the first step in solving a problem, is to define that problem. The next step is then to obtain the relevant information about the problem so that one can arrive at a solution to that problem.
Therefore by refusing to listen to me, AfME’s CEO was refusing to deal with the disability issues I was trying to bring to his attention, and as a consequence he was failing to make any form of proper or reasonable adjustment under the terms of the Disability Discrimination Act.
My purpose in bring these matters to the attention of AfME’s CEO was so that problems could be resolved as far as was possible on that day, and to try to raise both his and AfME’s disability awareness.
The reason there is such a lack of disability awareness and even ME awareness within Action for ME is shockingly simple.
The AfME Board of Trustees / Directors is self-selecting and self-perpetuating clique who unconstitutionally and illegally appoint and re-appoint each other in secret closed door meetings which ordinary members are not permitted to attend. It is this clique who make AfME policy in the same secret way behind closed doors without any consultation or participation from AfME’s membership who have been unconstitutionally and illegally disenfranchised from the entire policy making process.
Therefore the Board has grown increasing remote and unrepresentative of the ordinary members of AfME over the years, and therefore the Board have lost touch with the realities of daily life for people with ME and the nature and extent of the range of disabilities that are caused by ME. If AfME could be brought back from the unconstitutional, illegal and undemocratic wilderness, then ordinary members of AfME could be elected to the Board and this would inform the Board about the realities of ME and thereby instil a proper sense of ME awareness within the Board. The Board’s Disability Awareness could then be raised, and the closed and negative attitudes of the CEO and his staff turned around. Or alternatively, a new Board composed of elected Trustees / Directors might like to seek a parting of the ways with their current CEO and appoint someone who has a positive and “can do” attitude both to disability awareness and disability access problems as well as working in a truly and positively ME friendly way and who is ready, willing and able to lead by example.
AfME’s glossy conference pack was entitled “Action for M.E Transforming the world of M.E.” which will remain a hollow sound-bite unless and until AfME is prepared to accept the challenge of transforming itself. Action for ME says it wants to become more democratic and accountable in AfME’s latest edition of InterAction, AfME’s in-house magazine.
If so, does AfME really intend to change, and are they ready to change, or is this a cynical Public relations exercise designed to stave off justifiable criticism that they are undemocratic, unrepresentative, uncaring, and non-transparent and only represent the views of the very select self-appointed Board of Trustees who patronising make decisions behind closed doors, that they presume must be applicable to their members without
the consultation or participation of their membership?
AfME’s new watch words which constitute their new values were meant to be “empathy” and “courage” for ME suffers and carers, but as far as I can see there is precious little empathy involved in AfME’s relations with its members, therefore does AfME possess the courage to leave the undemocratic , unconstitutional and illegal wilderness it has cast itself into by refusing AfME members their legal rights under company and charity law to have a voice and a vote on policy matters, and to elect a democratically accountable Board of Trustees?
Ciaran Farrell
AfME member
ENDS.
UK ME patient charity Action for ME conference on “Work, welfare benefits and M.E – is anyone listening?”
Disability Access Report
By
Ciaran Farrell
Verdict : It was ghastly : Action for ME and most particularly its CEO & legal firm Allen & Overy have a lot to learn about ME, ME Awareness and Disability Awareness.
1 Introduction
AfME obtained over £500,000 of public money via a grant from the UK Lotteries Board, the Big Lottery Fund to carry out biopsychosocial type research through AfME’s National ME Observatory including an epidemiological study.
AfME’s conference on the 25th of September was for the Observatory to report back to AfME’s members who are the beneficiaries of the Observatory’s work as far as the Big Lottery Fund are concerned on the research that has
been carried out by the Observatory on behalf of AfME members.
AfME do not want to hold this meeting, they have to in order to for fill the terms of their Lottery Grant.
AfME originally planned not to have any ordinary members of AfME on the Observatory’s Steering or Reference Committees, but were told by the Lotteries board that if they did not do so, then they would not be able to obtain any grant money from the Lotteries Board. AfME hastily set up the required committees in order to meet the Lotteries Board’s terms, but they quickly reduced the status of the committees concerned to talking shops, and then side-lined and ignored them. Any members of these committees that objected to this were brow beaten into silence and or simply removed. AfME “took the management of the Observatory back in-house” thus rendering the committees concerned completely tokenistic.
Neither of these two committees or the people who made them up were in any way evident at the conference and they were conspicuous by their absence. A very small number of the individuals who had served on these committees attended the conference as individuals and not as members of the committees concerned.
UK charity law is a complex area within which Action for ME, AfME has sought to use what could best be described as linguistic gymnastics to deny members of Action for ME, AfME the right to attend meetings or to speak at those meetings or to vote on policy matters and also most critically to elect a Board of Trustees who would be representative of the membership of AfME.
Anyone who takes out a membership subscription to a charitable company for the purpose of becoming a member of that charitable company and who pays a membership fee for their membership and who is accepted as a member of that charity company is logically and legally a member of that charity and also a member of that company.
Action for ME is a charity and it is a company limited by guarantee and having no share capital. This legal type of company is one of the very few that can be registered as a charity under UK law.
AfME was founded under the Companies Act 1985 and AfME’s constitution, its Memoranda and Articles of Association, even the new ones that AfME did not tell, us, are Company Law documents.
This can clearly be seen as the start of the old and new Articles begins with a set of definitions as laid out by the Companies Act 1985 in the case of AfME’s old Articles and the Companies Act 1985 and 2006 in the case of the new Articles. The Memoranda also carry banners and headings referring to the Companies Acts.
Therefore the Articles, old, new or whatever are a Company law document which relies on the Companies Acts for its legal authority as would be expected for a governing document of a company limited by guarantee and with
no share capital which are the type of companies that could be registered as charities in the mid-1980s due to enabling legislation passed by Mrs Thatcher’s Government.
It naturally follows from this that the definition of members and membership that are defined in such a document would define a member in terms of Company Law ; Therefore a person who is member of the charity Action for ME is a member of the company Action for ME as the two are one and the same thing.
AfME’s claim that members of the charity Action for ME are not able to attend General Meetings, or to speak or to vote, or to elect a Board of Trustees because members of the charity are not members of the company Action for ME is untrue, false, illogical and has been used as an illegal instrument to deny AfME’s members the legal and democratic rights that we are entitled to.
2 The legal status of the AfME meeting scheduled for the 25th of September
There are only two kinds of meetings that are defined in AfME’s new Memoranda & Articles of Association, which is its constitution, Board of Trustees Meetings, and General Meetings. AfME cannot constitutionally hold a style or type of meeting that is not either one of these two alternative as to do so is to act in an unconstitutional and therefore illegal way.
AfME’s meeting of the 25th of September has been billed by AfME as a “Public Meeting” and it is to be presided over by AfME’s CEO and not the Chair of the Board of Trustees. AfME have sent out publicity for this meeting on the basis that it is open to all AfME members. Therefore it is not a closed meeting of the Board of Trustees.
This means that logically under the provisions of AfME’s new Articles of Association there can be only one other type of meeting that AfME can hold, a General Meeting.
Given AfME’s history of denying AfME members a voice, a vote and the ability to elect a Board of Trustees, it is my view that AfME have sought to prevent AfME members from raising legitimate concerns, policy issues and grievances about the unconstitutional and undemocratic way in which AfME is run which members are fully legally entitled to do at General Meetings by unconstitutionally and illegally redesigning a General Meeting as a non-General Meeting.
3 Disability issues
I was right to have previously raised serious concerns about the disability access for this conference which was held at the offices of Allen & Overy at 1 Bishop’s Square, as can be seen from previous postings on the matter. No one from AfME got into touch with me about the disability issues I had raised, so I was therefore obliged to contact AfME. Their response was that there was not a problem and everything was Ok and well under control.
The reality fell a very long way short of the glib assurances and reassurances which I received on the matter as I was not permitted to speak to anyone in authority at AfME. I spoke to staff over the ‘phone and they took messages and then expected me to be grateful when they had actually managed to contact a person within the organisation that was supposed to know something about the conference and how it was being organised, so they could relay to me their messages to me without questions, queries or comment.
Access to the building for people in wheelchairs roles as I correctly thought round the back, but no arrangements had been made for AfME to tell anybody about this, due to the complete and utter lack of disability awareness within Action for ME.
There are other problems, the main entrance to the building is controlled by two very large motorised revolving doors. These caused a lot of problems myself and other people because you must walk through them at a pace dictated by the movement of the doors themselves. There was an alternative thought that could have been used, but nobody told anyone about it.
There was then an automatic electronic check in style of security gate, like the ones found on the Underground which staff would use to pass through the barriers. Visitors were required to report to reception, but being Saturday the reception point was not either properly or adequately staffed, will start at all. This meant that people had to queue and to try and find someone so that they could get through the security barriers.
The set of rooms were the conference was being held was located in the basement.
The route from the main entrance to the rooms in the basement was tortuous and involved negotiating a number of extremely heavy doors, which caused absolute havoc for myself and others who have mobility problems.
Most people were expected to use the stairs, not the lifts.
There was only one small lift that was available which take people from the ground floor level into the basement, able to take a wheelchair and about three or four people at the very most.
There are no shortage of lifts, on the way through the building I noticed a large bank of lifts, but then it will shut down because it was Saturday!
There are further access problems in relation to the rooms used to the conference and toilet facilities as these were only accessible through very large and heavy fire doors which caused a problem to myself and a number of other people have not negotiable by anyone in a wheelchair except with the assistance of at least one other person.
I raised these issues and the issue of signage and a lack of help from staff from both the venue and from AfME with AfME’s CEO. I put to him that things would have been a lot easier had the proper information being available to people so they would know who to approach have helpfully required, and they would also have known what to do in order to use the relevant facilities to enter the building, and negotiate their way to the conference rooms.
There was confusion over the role of the staff that were in the venue as they either were also themselves as purely catering staff and had no role other than to supervise the dispensing of tea or coffee and biscuits.
This extended to their manager who said she was a catering manager and the building manager and that if I had any complaints I was taken up with a senior partner at Alan Overy, Mr Richard Evans.
I explained to this person that Mr Evans is a Trustee of Action for ME, and as such was unelected, unaccountable and non-contactable by members of Action for ME.
The response was you either like it or lump it. The individual concerned refused to render assistance to myself and others on the basis that she had to supervise the catering arrangements and neither she nor her staff could or should be “ diverted” or “ distracted” or “ prevented from” carrying out their catering duties, whilst insisting that there was no problem whatsoever because she and her staff would do everything in their power to assist sick and disabled people.
The individual concerned also refused to temporarily wedge back the heavy doors, including some fire doors so that people could get access to the conference rooms and to the toilets, on the basis that this would be a fire hazard.
She informed me that she had fire wardens monitoring the doors, so I said those people should be opening the doors of people, and they are not.
I said to her that those fire wardens could equally well monitor the doors in an open wedged back position, and if there was a threat of a fire then they could take further action required, such as closing the fire doors, or evacuating the building which would require the doors to be wedged in order to efficiently ensure that a large number of disabled people could pass through them.
She was not prepared to discuss the matter further, and told me in no uncertain terms that she did not have to allow disabled people into her building, because they were a fire hazard.
Therefore we were very lucky to be allowed to have conference in the building at all, which was all thanks to Mr Evans.
I was previously informed by AfME that there was for disability access to the building because a member of Alan Overy's staff, possibly Mr Evans himself or someone acting under his instructions, had “ walked the route” although AfME never made it clear what route they were referring to because they refused to specify the starting point and destination of this so-called route.
I attempted to bring these salient facts to the attention of AfME’s CEO, but frankly, he did not have time to listen to me, and nor did he want to listen to me, and he told me so.
While he wanted to do was to tell me I should not be so critical, and that he and his staff had worked very, very, very, hard, and that basically eyeing everybody else should be exceedingly grateful to him and Action for ME.
Since I was not able to get these salient facts through to AfME’s CEO, I had to be content to tell him it was not a question of simply working harder, one had to work more intelligently, and in order to do this it was necessary to listen to disabled people, about disability access.
The subject of disability access to this venue has now become taboo as far as AfME’s CEO is concerned, which shows that both AfME, its CEO, and its Broad of Trustees and especially Mr Evans have a great deal to learn about disability, disability access and I would remind them all of the provisions of the UK Disability Discrimination Act, has quite obviously in adequate arrangements were made for disability access, and this is a failure under the legislation to make proper all reasonable accommodation for people with disabilities.
I would also like to point out that neither myself, or any other disabled person, and especially wheelchair users should not be regarded as fire hazards in order to dismiss our needs as disabled people.
I would also like to point out that because AfME’s CEO refused to allow me to point out to him the above facts and their significance, because he refused to listen, and he refused to take either the issues will mean seriously, because he refused to take his management role seriously as the organiser of the conference, I am publicly calling both him, and Action for ME to account through this Facebook site.
Since AfME have planned another meeting in this venue, I call upon AfME’s CEO, and its company secretary, Mr Evans to contact me as a matter of priority so that these issues can be resolved.
One final point, I have left a number of messages for AfME’s CEO to contact me on a number of issues, and he has not responded to any of them, therefore I do not consider it to be appropriate simply to leave more messages that he and AfME will ignore.
Therefore, I consider that making this matter public via the Internet is a fair and reasonable step to take in the circumstances.
4 Conclusions
Under the terms of the UK Disability Discrimination Act one can take legal action against an organisation that has failed to make what is described as “a reasonable adjustment” to accommodate a disabled person’s disability needs when a disabled person informs the organisation of their disability needs.
It was clear from my encounters with AfME’ CEO, his staff and those of the venue, that they considered themselves under pressure, and the CEO in particular, who simply wanted me to see things from his point of view and was not prepared to see things from a disability friendly point of view.
Despite the fact that AfME’s CEO took the point that it is not simply a matter of working harder, because one has to work more intelligently in order to know and understand the needs of disabled people, he was determined that I should only see matters in a positive light.
He therefore case what I was saying away as being “negative”, “critical” and time consuming.
I would point out to AfME’s CEO and Board of Trustees, and to Mr. Evans in particular that the first step in solving a problem, is to define that problem. The next step is then to obtain the relevant information about the problem so that one can arrive at a solution to that problem.
Therefore by refusing to listen to me, AfME’s CEO was refusing to deal with the disability issues I was trying to bring to his attention, and as a consequence he was failing to make any form of proper or reasonable adjustment under the terms of the Disability Discrimination Act.
My purpose in bring these matters to the attention of AfME’s CEO was so that problems could be resolved as far as was possible on that day, and to try to raise both his and AfME’s disability awareness.
The reason there is such a lack of disability awareness and even ME awareness within Action for ME is shockingly simple.
The AfME Board of Trustees / Directors is self-selecting and self-perpetuating clique who unconstitutionally and illegally appoint and re-appoint each other in secret closed door meetings which ordinary members are not permitted to attend. It is this clique who make AfME policy in the same secret way behind closed doors without any consultation or participation from AfME’s membership who have been unconstitutionally and illegally disenfranchised from the entire policy making process.
Therefore the Board has grown increasing remote and unrepresentative of the ordinary members of AfME over the years, and therefore the Board have lost touch with the realities of daily life for people with ME and the nature and extent of the range of disabilities that are caused by ME. If AfME could be brought back from the unconstitutional, illegal and undemocratic wilderness, then ordinary members of AfME could be elected to the Board and this would inform the Board about the realities of ME and thereby instil a proper sense of ME awareness within the Board. The Board’s Disability Awareness could then be raised, and the closed and negative attitudes of the CEO and his staff turned around. Or alternatively, a new Board composed of elected Trustees / Directors might like to seek a parting of the ways with their current CEO and appoint someone who has a positive and “can do” attitude both to disability awareness and disability access problems as well as working in a truly and positively ME friendly way and who is ready, willing and able to lead by example.
AfME’s glossy conference pack was entitled “Action for M.E Transforming the world of M.E.” which will remain a hollow sound-bite unless and until AfME is prepared to accept the challenge of transforming itself. Action for ME says it wants to become more democratic and accountable in AfME’s latest edition of InterAction, AfME’s in-house magazine.
If so, does AfME really intend to change, and are they ready to change, or is this a cynical Public relations exercise designed to stave off justifiable criticism that they are undemocratic, unrepresentative, uncaring, and non-transparent and only represent the views of the very select self-appointed Board of Trustees who patronising make decisions behind closed doors, that they presume must be applicable to their members without
the consultation or participation of their membership?
AfME’s new watch words which constitute their new values were meant to be “empathy” and “courage” for ME suffers and carers, but as far as I can see there is precious little empathy involved in AfME’s relations with its members, therefore does AfME possess the courage to leave the undemocratic , unconstitutional and illegal wilderness it has cast itself into by refusing AfME members their legal rights under company and charity law to have a voice and a vote on policy matters, and to elect a democratically accountable Board of Trustees?
Ciaran Farrell
AfME member
ENDS.
Attitudes