Justice for Jenny: delivered

Picture of Jenny Hatch in between her friends Kelly Morris and Jim Talbert. Morris is wearing a black short-sleeved top with white trouses, Jenny a multi-coloured, horizontally-striped, knee-length dress and Talbert a grey suit jacket with black trousersWoman with Down syndrome prevails over parents in guardianship case (from the Washington Post website)

Yesterday Jenny Hatch, who had been fighting to free herself from a restrictive guardianship arrangement which required her to live in a group home against her wishes, won her case (see earlier entry). Jenny (officially Margaret Jean Hatch) had lived in the community in Hampton, Virginia, until last year when a bicycle accident meant she had to seek medical care, and although her friends were willing for her to live with them (and had been employing them in their thrift store, which is a kind of second-hand shop for British readers), they were under the impression that she could not get a Medicaid waiver (an allowance for free healthcare) unless she was in a group home. Shortly afterwards, her parents filed for legal guardianship and she was forced to live in group homes while the proceedings were ongoing. Her mother was awarded temporary guardianship in February. Yesterday that was quashed; temporary guardianship was awarded to her friends, Jim Talbert and Kelly Morris, for a year with the expectation that she will be released from any such arrangement after that. There are two local TV news reports here and an earlier Washington Post report here.

Credit must go to Rachel Cohen-Rottenburg for drawing attention to this on her blog last November; I first heard of it through her and brought it to the attention of some of my disability activist friends here. We were discussing the relative merits of guardianship in the USA and Germany and the Mental Capacity Act here in the UK, which presumes capacity unless proven otherwise and specifies that an unwise decision does not nullify it. The guardianship arrangement Jenny was under was a hugely restrictive one: one of the people who testified on Hatch’s behalf said that he could not remember seeing a contract as restrictive as Jenny’s parents’ guardianship request, which he called “a kind of civil death … a complete removal of all decision making for the individual, as this is written”.

Before her accident last year, she had worked, gone to church and been involved in political campaigns and was well-known and well-liked in her community; in the “homes”, her mobile phone and computer were taken away from her and her contact with her friends was extremely restricted. Her friends had to give notice four days in advance, and the times they were allowed to visit narrowed to just half an hour on Saturday or Sunday and only at the “home”; they were not allowed to take her out, phone her or take calls from her. She had also been put to work in a “sheltered workshop” where the work consisted of putting labels on things and snapping plastic things together, which she found boring, and she did not know how much she was earning or have a record of her pay.

Jenny’s family claimed that they loved her and that her qualities were the result of their care and nurturing; her grandmother claimed that Jenny’s mother had arranged her life so that they were never more than twenty minutes apart. Various comments appeared on different websites claiming that Jenny had been seen in public and was happy, and that her friends were giving a distorted picture of what was happening. However, Jenny’s friends have also said that when out in public she had appeared increasingly withdrawn, it was known that she had run away from “homes” several times, and her views were made quite clear all along; she expressed her desire and determination to go home with Jim Talbert and Kelly Morris every time she appeared in public at court hearings; her parents said nothing (except when her father took over her Facebook account and sent messages to Jenny’s supporters, including me). If Jenny were to stay cooped up in a group home, not allowed to see her friends or get involved in the community, and forced to spend her days doing repetitive work in a “sheltered” workshop, what chance would she have to display the qualities they claimed her mother nurtured in her?

In this case it was not disputed that Jenny needed support and she was not asking to live entirely independently on her own, but for everyday personal freedoms and to be able to decide who she lived with and worked for. She was supported by a number of major American disability activists who saw this as a important case in the struggle to secure rights for people with intellectual disabilities (and disabilities generally, as disabled people in America are often forced into nursing homes when the state will not provide home support and they do not have insurance), as well as by the American Civil Liberties Union (ACLU, also in this letter). As has been observed in such cases in the UK, there is a balance to be struck between protection and allowing someone to live a life, as if they are wrapped up in cotton wool, denied any freedom and protected from all risk, they will not have much of a life, let alone the one they are capable of. The life Jenny’s family were asking for her was a classic example of the latter, and had already been found to be a miserable existence for her, and it is quite just that it was rejected by the court. People with learning disabilities have rights, including such liberty as would not lead to them coming to serious harm, regardless of what someone else might consider to be in their “best interests”, and it is in almost nobody’s best interests to be treated as a prisoner and denied any choice in how to life one’s life.

Image source: Justice for Jenny campaign.

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