Charities: Working 4 or Doing 2?

This is the first of what will be an occasional series of blogs pointing out incidences of Charities forgetting who it is they exist to represent and, sometimes, becoming self-serving instead. I write this as someone who has requested help from charities when at my most vulnerable and then experienced what it feels like to be betrayed for not fitting into any of the shapes on their eligibility puzzle. You know, like those children’s story puzzles where the child fits different cut out characters into the corresponding hole in a picture attached to a wooden base.

The views expressed below are mine, supported by friends, family and the professional carers who assist me in various aspects of living. They have read the report under discussion during visits to my home. I have also taken account of views expressed by members of disability forums I visited prior to writing.

1: In March 2011 people who are still receiving “Incapacity Benefit” because they were already on that benefit when ESA was implemented, will be “Re-Assessed” at a “Work Capability Assessment” where an “Assessor” will have the power to remove them from the higher, health or disability related component of ESA, and place them on the lower, work related component of that benefit.

2: Because both the WCA process and ESA have already proved to be unfit for purpose three charities: Mencap, Mind and the National Autistic Society were asked by Professor Harrington, head of the Independent Review of the Work Capability Assessment (WCA), to propose amendments to the WCA descriptors relating to mental health, autism and learning disabilities. The scope of this piece of work was defined by Professor Harrington. This is our response to their combined report dated December 2010. It is not clear whether any “users” of these charities were involved in the consultation process, though what is written in the paragraph (see c) below suggests this is very unlikely.

We are amazed, but not surprised, that the three charities in question, namely, the National Autistic Society: Mind: and Mencap: have taken it upon themselves to represent all psychological and psychiatric service users for the following reasons.

a) As potential beneficiaries from another Draconian change proposed by the coalition government i.e. the changes to Disability Living Allowance, we believe it is highly unlikely that these charities have been able to remain totally objective in responding to Professor Harrington.

b) It is our belief that all individuals and organisations who purport to represent persons with disability should be loudly opposing all of the proposed reductions to assistance for the most vulnerable members of our communities. In particular, the proposed changes to WCA, ESA and DLA would appear to be being rushed through at a dangerous and inconsiderate speed based on political ideology rather than any benefit to the people whose lives they were implemented to enrich.

c) We are surprised that the following paragraph appears in the report compiled by the charities:
“We believe that Professor Harrington has presented us with a unique opportunity to reform the descriptors that underwrite the WCA, and we were keen to engage with this opportunity. However, it should be understood that this work has taken place within a very short period of time. Because of the time restraints imposed on this piece of work, it has not been as extensive or comprehensive as it should have ideally been.”

At best this is an outstanding admission of betrayal of those these charities purport to represent. At worst it demonstrates that these charities were seduced into undertaking a purely cosmetic exercise. How dare these people who claim to represent us let us down by undertaking a “piece of work, it has not been as extensive or comprehensive as it should have ideally been”.

We believe that by colluding with Government in this way these charities have returned to pre-1980’s philosophy that promoted the view that the long-term sick and disabled should be grateful for any crumbs that fall from the tables of the well off and the able bodied. They have given government the message that all we are worth is a rushed, cobbled together, incomplete piece of work. If they truly represent the people they claim to they should have refused to embark on this task under these conditions. They should have insisted, on our behalf, that government should postpone the planned changes in WCA and ESA until a comprehensive and far reaching piece of research that includes the views of the long-term sick, of the disabled, of the mentally ill, and, of those with learning disabilities, along with the views of the medical professionals, carers, and others who support these people in the community.

We believe that in their indecent haste to dance to the government's tune the three charities have published a report that fails to adequately address the hasty and poorly thought out propositions of the government. We believe that in the time allowed they could have made the following challenges to the government's propositions and the discriminatory and stereotype laden language that is used therein.

i. Incapacity Benefit was paid after assessment by at least one, and usually several, medical professionals. For any organisation purporting to represent those who receive this benefits to collude with a system which seeks to remove that benefit with no reference whatsoever to the medical professionals involved in the original decision, either in writing or in person, is both dangerous and outrageous. The assumption of the coalition that the medical professionals on whom persons of disability rely are somehow involved in perpetrating fraud is arrogant and undermining of the medical professions. We believe no person or organisation purporting to represent us should have embarked on any discussion on "Work Capability Assessment" without insisting that professionals of any discipline, along, where necessary, with the carer of the person being assessed, are involved in any reassessment of the abilities of the person under assessment. We believe we have been let down in this instance.

ii. An assumption of guilt underpins the philosophy behind the Work Capability Assessment of those who've already been deemed to be deserving of benefit. This is implicit in the proposal to reduce the amount of benefit paid to vulnerable, ill and disabled persons before the assessment is carried out. No other members of British Society are treated in this way. It should be the role of individuals and organisations representing persons with disabilities to remind government that persons who have been moved up to the long-term rate of incapacity benefit are, by definition, long-term disabled and therefore regularly in touch with medical persons who are qualified to assess whether returning to the workplace is in the best interest of that person. We believe that no person or organisation purporting to represent us should have embarked on this exercise without first insisting that this assumption of guilt be removed. We further believe that by colluding with this presumption of guilt the charities have assisted the government in increasing the stigmatisation with which we daily live. We believe we have been let down in this instance.

iii. While taking part in this paper exercise the three charities have utilised case studies which serve only to reinforce stereotypes of disability. Only persons ignorant of the reality of living with disability would facilitate laypersons in reducing the symptoms of multifaceted conditions such as MS or Depression to a micro-level that assumes all persons with those conditions are the same. We believe that no person or organisation purporting to represent us should allow others to perpetrate the stereo typing of disabled persons in this way. The least we expect of those purporting to represent us in our absence is that they challenge any act that encourages the stereotyping or stigmatising of those with disability. We believe we have been let down in this instance.

iv. Through undertaking an exercise that used assessment based on "descriptors" the charities have further colluded in reinforcing stereotypes. The assumption that all persons who live with a particular condition or disability will behave in the same way during the interview is an outrageous and insensitive one. Although, through the reports, the three charities challenge most of the descriptors, they then embark on the collusive act of coming up with their own suggestions. We believe that any individual or organisation purporting to represent us in our absence should have refused to embark on this exercise. The least we would expect of those representing us in our absence is that they would continually reinforce the individuality of each of us and the quality of each of our lives. We believe we have been let down in this instance.

v. The vast majority of people who live with disability would love to be able to work, earn money and further their independence. Many of us already do voluntary work which we now feel we may have to give up because this will work against us at our WCA assessment. We live with the realities of our condition knowing that although we may be able to work in an unpressurised and supportive environment, the commercial workplace will not be like this. We know, many of us from experience, that the moment we need to take time off for illness, aggravation of an existing condition, hospital appointments etc. Employers and/or work colleagues will view us as a liability rather than an asset and that many of us will be asked to leave for that reason. The result will be trying to live on a benefit that is inferior in value to incapacity benefit even though our impairment renders us unemployable in the job market. Many of us, through being deemed "fit for work" will have lost our DLA because of the new criteria in assessing that. We believe that through colluding with this exercise those who purport to represent us have condemned us to a life spent in a deprivation cycle. The least we would expect of those purporting to represent us in our absence is that they would require others to consider the long-term implications of what is being proposed. We believe we have been let down in this instance.

vi. The government have warned us that many people will become unemployed over the coming years. To expect persons with disability to compete in the job market at this time is a callous and uncaring act because the disabled person competing for a job with someone who is able bodied will be at an immediate disadvantage for many of the reasons stated above. The three charities, in becoming involved in this exercise, have added their support to legislation that is no more than a cynical attempt to remove disabled persons from invalidity benefits and place them on the inferior jobseekers allowance. For the reasons stated in this paragraph there can be no other outcome. The least we would expect of those purporting to represent us in our absence is that they would challenge such a cynical move, not collude with it. We believe we have been let down in this instance.

vii. Mencap, The National Autistic Society, and, Mind, are guilty of colluding with a government who show total disregard for Human Rights Legislation and to seek to wipe out the progress made under the Disability Discrimination Act and the Social Inclusion policies of the previous government. This is being done purely to suit political ideology, while claiming to be acting in the best interest of disabled persons these three charities and the government are doing precisely the opposite. The least we would expect of persons and organisations purporting to represent us in our absence is that they stand up in the face of political bullying and seek to remind those in power of our rights. We believe we have been badly let down in this instance.

Finally: by their own admission the three charities have undertaken a rushed and incomplete piece of work which will be used to support the policy of the government in March. We would argue that Mencap, the National Autistic Society, and, Mind, demonstrate that they are not fit for purpose through their collusion with the government over these matters. Those who purport to advocate on our behalf have allowed themselves to be drawn into a consultation process the purpose of which is to gain respectability for acts which amount to bullying and victimisation of some of the most vulnerable in our society. We believe that individuals and organisations that purport to represent us in our absence should, at the very least, refuse to be used in this way. We believe that the three charities named above have betrayed those they purport to represent. We expect them to say that without their input the legislation would have gone ahead anyway, and they will probably be right, but, it would be going forward without the endorsement of those "respected charities" whose names will be used to convince the public that what is being done is right.

In conclusion: We are discussing a matter on which all three of the major political parties in this country are refusing to either represent or support us in our fight. The least we expect of those individuals and organisations purporting to represent us in our absence is that they would publicise and draw attention to this disenfranchisement: not collude with it.