BY RON POSNO
There are three four-letter words: pity, care, love. Which one is completely unacceptable? Of course, it’s pity, and unfortunately it creeps into the basis of far too many so-called support programmes for people with dementia … just like programmes for people with other disabling conditions.
Disability or handicap – reality or judgement? Disabilities are real: Handicaps are judgements of that disability by other persons or in the worst case – of the disabled person him/herself. Handicaps are absolutely the worst that can happen to any person – able or disabled. It’s a judgement that limits participation often in excess of the disabling condition itself. Rick Hansen knows this; Terri Fox knew this; Michael J. Fox knows this, and Ronnie Reagan(former President) knew this. Before their accomplishments, they were advised by many so-called experts(pitying their conditions) that they would harm themselves in any such undertaking. They all had real disabilities, and in not accepting the handicapping(albeit well intentioned) judgements of their friends, family and experts, they took confidence in their own belief and understanding of their abilities … and proved all the handicappers wrong.
Pity is a handicapping condition. Pity is looking at a person’s disability and feeling sorry. Feeling sorry is the first step and the basis for creating a handicap – a judgement of presumed inability. And once the handicapping begins, judgements of limitations and barriers begin … often to the needless detriment of the disabled person.
Disability is reality. It can’t be changed, but while a disabled person has limitations, s/he still has many things s/he can do. Stop the pity and start the care. Caring begins with an understanding and acceptance of reality. For many, becoming blind is reality. Most instances of blindness can’t be fixed. That must be understood/accepted before moving unto identifying remaining abilities, training, and treasuring successes. And that’s the basis of the best support programmes – acceptance of reality, identification of strengths, and rewarding success. Not pity.
Dementia is a disability and doesn’t have to be a handicap. It’s different from other disabilities because the disabling conditions develop over time and real strengths can be utilized for years before definitive limitations are established. Unfortunately, due to ignorance and pity, dementia is handicapped by stigma and denial. Once assessed with dementia, the person must get past the pity and become fully informed of his/her reality. Easy to say, but difficult in practice. Particularly, when everyone around the patient wastes time and creates more handicap with expressions of sorrow and pity. Reality can be better accepted with understanding and caring(empathy) and focus upon abilities and needs. No pity allowed in the programme.
This year, the Alzheimer Society of Canada produced two wonderful statements:
- the Charter of Rights for People with Dementia, and
- Meaningful Engagement of People Living with Dementia.
Neither statement speaks of pity. They both address the need for people with dementia to be treated with respect and that their wishes and voices will be heard and considered.
Now, I have a problem. That same Society in December, issued a Position Statement with respect to MAID(Medical Assistance in Dying) without evidence of any consideration of the rights for people with dementia nor evidence of any meaningful engagement of people with dementia.
What we do know is that the Society, in submitting a brief to the original study panel commissioned to prepare suggestions for legislators for what is now known to be MAID, said essentially that the Society could not support the intents of MAID because dementia people were “vulnerable.” The Society said the same thing to the CCA (Canadian Council of Academies) commissioned by the government to study the problems of MAID over its first year+ of use with respect to people with dementia. Consequently, the Federal Minister of Justice said in November 2018, “the Government has no plans to change.” Further questioning resulted in the Minister stating that people with dementia, “need to be protected. They are too vulnerable.”
Sounds too familiar and sounds like pity.
The Canadian Society needs to listen to people with dementia and their caregivers. They must stop the pity and all the resulting handicapping that results from pity.
When first diagnosed, most people with dementia are not irrational nor ignorant. They can make an AR(Advance Request) for MAID and they can do it as part of Advance Care Planning. Their family and their caregiver(s) can be consulted as to effecting MAID and the role and assignment of an appropriate SDM(Substitute Decision Maker).
Not every person with dementia will want MAID. But every person with dementia should have the right to choose.
I don’t want pity. I am not vulnerable: I don’t need protection. I want to be heard and I want my rights. And I do need a Society that reflects my wishes and supports my rights … just like they say in their own statements.