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Dementia and Human Rights – Part 9


So having started to look at the UN convention of the Rights of Persons with Disabilities, I’m going to look at the next few obligations, we were up Article 19.


The next one to deal with is Article 20 – Personal mobility.  The State should facilitate personal mobility with the greatest possible independence, including to quality mobility aids, devices and assistance, including making them available at an affordable cost.  The State must also provide training in mobility skills to people with disabilities and those who work with them.  The UK has Disability Living Allowance, which has a mobility component, which is being replaced by Personal Independence Allowance and people with disabilities have access to the NHS with the various forms of mobility specialism’s within it.


Article 21 is Freedom of Expression, and opinion and access to information.  People with disabilities are entitled to seek, receive and impart information and ideas on an equal basis with others through all forms of communication of their choice.  It is always fabulous to meet other bloggers and tweeters online and especially those with a disability.  I’m often have huge admiration for the viewpoints that they express and I’m glad that I live in a place where they have a voice and it is heard.  I appreciate that that is not always the case, but I’m glad when it is.  The information that the State imparts to the population should be in multiple formats, so that it is accessible and it should be done “in a timely manner and without additional cost”.  This Article also includes encouraging private firms to make information accessible, including on the internet, encouraging the mass media to make their information accessible and recognising and promoting the use of sign languages.


Article 22 is Respect for Privacy.  This includes privacy of family, home, correspondence or other types of communication or unlawful attacks on their honour or reputation.  I saw recently a forum discussion about 2 people living in a care home, one widowed, one married, both in their 80s, both with dementia, who had sex.  I assume the forum was trying to get people to comment on the care of the care home, but I was angry on their behalf that people were commenting on their private life and left my comment on the forum to that effect.  Their ability to have and consent to sex had nothing to do with their diagnosis, it was around their capacity and the information put on the forum gave no indication of their capacity to consent.  Therefore there is an assumption of capacity and in which case, our discussion of it was an invasion of their privacy and it made me feel uncomfortable, even though it was anonymised!!  People with dementia are still people, they are people first and we would not discuss someone else’s private life in this way, so we should not discuss theirs.


This Article goes on to say that the States should protect the privacy of personal, health and rehabilitation records of people with disabilities on an equal basis with others.


Article 23 is Respect for Home and the Family.  This picks up on the forum point made above, the State should protect persons with disabilities in relation to matters relating to family, marriage, parenthood and relationships on an equal basis with others.  It goes on to acknowledge their right to have a family on the basis of free and full consent of spouses.  It also acknowledges their right to have children and information around family planning in order that they can choose to have as many children as they wish and when they wish.  It confirms that they can retain their fertility on an equal basis with others, so eugenics is not lawful, as this would interfere with their fertility.  The Court of Protection does from time to time make orders relating to the fertility of someone who lacks capacity, but sterilisation would not be their first choice and they would look to see if other forms of birth control, less permanent would be preferable.  It goes on to say that the State shall ensure the various forms of the rights of parents are protected, but it also says that the best interests of the child shall be paramount and that assistance should be given to the child rearing responsibilities of people with disabilities.