Severely physically challenged patients working in a Japanese coffee shop. This is only a start, but it is a good one.
This morning, Laura Richard’s newsletter dropped into my e-mail box. Laura founded Paladin National Stalking Advocacy Service.
The current approach, namely that stalking is a regular police matter, does not work. In my opinion, assessing and investigating stalking should become the domain of specialized task forces containing specialized psychologists, psychiatrists and IT specialists. They’d be much more efficient and effective.
- Police now waste a lot of time and resources on “stupid shit” that is not actually stalking. It leads to police fatigue, the assumption that any new reported incidence of stalking is bound to be more time-wasting “stupid shit”. (Many police officers prefer to investigate issues like money-laundering.)
- Police do not have the required psychology and psychiatry knowledge. It is fair to say that the stalking knowledge of the average police officer is similar to that of the average homeless meth addict. Police officers are not able to distinguish between cases that are merely “stupid shit” and cases that contain a serious threat to someone’s safety.
- Currently, going to the police is often the worst thing to do when you are being stalked in a worrisome manner. It enrages the stalker but also confirms that he is in control and untouchable.
- Police do not have the required IT knowledge. It is a persistent myth that stalkers always only use their own public name in digital stalking and never use advanced IT knowledge. And, unfortunately, police take any kind of printed digital matter at face value. (I could easily fake printed evidence that anyone – even, say, Barack Obama or Donald Trump – sent me an e-mail stating that he is going to kill me. If I use the name of any random local individual and print that faked e-mail to me, police are likely to accept it as evidence. Police prefer printed matters as they can be scanned into the computer system whereas any kind of other evidence “would likely get lost”.)
Police clearly failed Shana Grice who was fined for wasting police time when she reported stalking, then was killed by her stalker.
Police may actually have precipitated the murder of Molly McLaren but, in any case, could and should have foreseen the attack on her, hence should have acted to prevent it, in theory. The murder of Bijan Ebrahimi could have been prevented too.
This is not the fault of the police. It is the result of police being unequipped to deal with stalking cases.
Shana Grice’s, Bijan Ebrahimi’s and Molly McLaren’s are examples of sad cases that make it into the limelight. Most don’t, yet happen anyway.
On the other hand, cases of stalking can also involve people with, for example, certain intellectual deficiencies whose behaviour puzzles other people so much that they don’t know how to deal with it and feel stalked. Police do not know how to deal with that either. Criminalizing such people (with learning difficulties or intellectual disabilities) serves no purpose whatsoever, and only does harm. It is a matter of educating the public. (I once spotted a poster about this at my local police station, from a foundation or charity.)
The above is the title of the 2018 Petrie-Flom Center Annual Conference, which took place in June. I had registered for the event because the topic interests me greatly and I have so much to learn in this area. Unfortunately, I turned out to be away and unable to attend after all.
I am delighted that the Petrie-Flom Center not only decided to make some of the lecture materials available beforehand, but recorded the lectures and has made the videos shareable.
Prominent point of discussion at he conference was the question whether a disability is merely a difference, or a bad difference. Putting the question like this is an oversimplification but it is a good starting point. I will discuss this matter and these lectures in greater detail in coming posts.
For now, here are the opening remarks, and first talks.
Smell the flowers, feel the wind, go along on the ride. It is possible. And if it is possible, there are only lots of good reasons for all theme parks to put this into practice for attractions that are not accessible to people in wheelchairs.
(I owe Sven Slootweg for telling me about this.)
Once you start thinking about how many of the impairments of physically non-mainstream people are created by society, you notice it increasingly frequently.
Why, for instance, isn’t it much easier to roll onto a train than it currently is in most cases?
(For blind, deaf, and deaf-blind people, more could be done as well, but that kind of research, into wearable technology that connects with the already present station networks, is underway.)
About a week ago, someone tweeted about a very positive experience with Eurostar. Others reported similar experiences. But it still involves complicated activities that simply shouldn’t be necessary.
In my home country, it’s no better. If you’re in a wheelchair, you can get the required assistance that enables you to travel by train, but I think that you actually have to book it in advance. So, while the rest of us simply hop on the train to the next town if we suddenly feel like attending a theatre performance or concert of any kind, anyone who uses a wheelchair is probably forced to jump through multiple hoops first and then realizes he or she won’t be able to get to the event in time.
(At this point, I am not aware of any transport-related research in my home country that focuses on accessibility, but I have not concluded my little investigation yet and still need to make some phone calls as well.)
Why don’t trains come with automatically extending ramps that lower onto the platform?
In the rare cases that the platform is higher than the train floor, they should not extend, of course, but that can be accomplished either sensor-based or programmed.
Someone on Twitter (Sven Slootweg: thanks!) helpfully made a drawing for me:
Well, here is one possible answer as to why no innovation is taking place, for the case of Britain:
I also ran into some other news, though, and sent the message below to the Spanish manufacturer of those new trains. I am looking forward to hearing back from them.
I saw that you are constructing new trains for Britain (here: http://www.bbc.co.uk/news/uk-england-42937218).
As you probably know, 10 to 20% of any population is considered “disabled” but many physical impairments are actually caused by hindrances created by society.
By 2050, there are expected to be nearly one billion urban dwellers who are “disabled”. How are you taking them into account in your new designs? Do your trains have automatic extending hinging ramps that lower onto the platform so that anyone in a wheelchair can easily roll on and roll off and make use of public transport just as easily as anybody else?
I am neither disabled nor looking after someone who is disabled. I am merely becoming increasingly aware of how biased society is toward mainstream people.
I look forward to your reply. Thank you.
There is no way that they can ignore such a large proportion of the human population, and I can imagine that increasing accessibility, also for parents with small children, would also improve punctuality.
As someone else commented or hinted at (a blog post for which I currently don’t have the link at hand), such automatic ramps would likely also be very handy for freight trains.
For more on the topic, see for instance this article in The Guardian:
I just ran into the case of KW, a 52-year-old woman who suffered a brain haemorrhage during an operation at age 34. A complicated matter. Am still reading and mulling it all.
People are currently focusing on Trump and his silly comments, but perhaps they should be focussing on Britain.
A few days ago, British newspaper The Guardian reported about a eugenics meeting that allegedly had been convened in secret, involving someone who has previously advocated child rape. This meeting is supposed to have taken place at University College London and white supremacists supposedly were present at this meeting. Continue reading
I am wrapping up the much improved version of “We need to talk about this“. There is now a chapter on euthanasia, for instance, with a discussion of the Groningen Protocol.
I didn’t write this book to convince you that my views are the right ones, even though I hope you will agree with many of them. I wrote this book to encourage as many people as possible to develop their own opinions in these areas, to go beyond impassioned exclamations like “this is so wrong” or “this is very good” and to make their opinions known to their governments and academics, and to discuss these issues with their friends, relatives and colleagues. Continue reading
Well, okay, as long as you start with Juan’s talk.
I ran into a discussion on Kialo, to which I quickly contributed the first paragraph below and penned what I have added below, all within about five minutes. I later edited it a bit, to make it easier to read.
I am so pleased someone started this discussion. I promote non-discrimination of embryos and fetuses. A child is not a consumer product but a human being who must be loved and encouraged to flourish. How can you love one child but not another if the latter is non-mainstream? I’ve been thinking about that and it’s made me wonder if it actually means that the parents aren’t fit to be parents. I haven’t dared say that out loud yet, but this discussion clears the road for me.
So yes, maybe parents-to-be should require vetting.
Within a few decades, we will no longer require sex to create babies, but will make our offspring in the lab, possibly on the basis of skin cells from each of the parents. We’ll probably look after our little gestating (incubating) children as if they are rare orchids that we want to bring to bloom.
(So by that time, women will no longer have a need for abortions and they won’t have to menstruate and experience PMS any longer either.)
I can imagine very well that you will require a license in the future in order to have a child. Somehow, that feels like an automatic consequence of the possibilities we will have then.
And also, indeed, why should adoptive parents be scrutinized but are natural parents free to do whatever they want?
And after all, in that distant future, anyone who wants can probably have a child (technically speaking). Even adoption may slowly become a thing of the past, that is, if we get to the point that we no longer succumb to illnesses and accidents and maybe even can choose when our lives end.
I hasten to add that at the moment, natural parents are not always free to do as they please either, of course. For example, in countries with a great deal of inequality, the state may step in on the basis of what is no more than prejudice in practice.
Nowadays, some children suffer horribly, either because of their parents or because of someone else. Sometimes before children are removed from their parents and sometimes afterward.
In practice, perhaps it won’t be an actual license but a training program that must be completed with good results. If that training is tough and long enough, that alone will already sort committed parents from parents who aren’t ready for a child.
Would they have to get a license or go through some kind of training program every time they want to have a child? Yes, I think so. Insights change.
It’s even possible that parenting will eventually become a profession.
Unfortunately, Kialo may not work very well with Linux. I was able to post my contribution, but seem unable to comment on other people’s contributions. Maybe it’s part of the learning curve, but I did see the intro video and the comment option mentioned in it simply does not seem to exist for me.
Techniques like gene editing may bring more equality, but can just as easily bring less. Now is the time to make up our minds about the future because we can’t leave this up to a handful of experts who advise the government.
Most of you will have heard about the recent CRISPR-Cas9 breakthrough. On 26 July, scientists in Oregon successfully used the technique to replace a defective piece of DNA with a regular piece of DNA. It concerned a gene with faulty DNA that normally results in heart disease.
This was only one small step, involving fertilized egg cells that were allowed to develop for no more than a few days and weren’t implanted in a womb.
But when techniques like CRISPR become routine, which “defects” are we going to edit out and which ones will we leave intact? And will this be the domain of commercial enterprises who sell their services or should this be part of everyone’s health care?
At the moment, we have the practice that fetuses are tested for certain conditions. To give you an idea of what this means in practice, in 2009, the abortion rate for fetuses diagnosed with Down’s syndrome in the UK was 92%.
Also, embryos created with IVF are subjected to PGD (pre-implantation genetic diagnosis), which has been around for decades. The use of IVF is rising.
Right now, the UK’s Human Fertilisation and Embryology Act 2008 states that “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop: (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”
Who decides what a serious physical or mental disability, a serious illness, or any other serious medical condition is? In practice, that’s the UK Human Fertilisation & Embryology Authority. Currently, embryos with one of 400 conditions such as a genetic form of dwarfism called achondraplasia or Down’s syndrome are never used in IVF in Britain. Deselection of embryos with other conditions is awaiting approval.
Will the same eventually happen when techniques like CRISPR go mainstream?
This may all sound far off right now, but within the next few decades, human procreation is bound to change drastically. It is likely that we will eventually stop using sex to create babies. Instead, we will make all our babies “in the lab” and let the embryo develop in an artificial womb.
There is nothing wrong with that. We’ll get used to it, just like we got used to cars, trains and planes or the fact that women can attend universities now whereas they weren’t allowed to in the not too distant past.
But it will also mean that we’ll be able to do a lot more genetic tweaking. We need to start thinking about these upcoming changes now. What kind of society do we want to see develop? Do we want people to resemble each other more and behave in similar ways?
There are several reasons for not eagerly fixing too many “defects” that lead to viable human beings who live worthwhile lives, other than that groups of people are starting to demand the right not to be “edited out”.
- The first is that there are currently several ongoing trends of emancipation. This includes the emancipation of persons with a wide range of conditions who we used to lock up and keep out of society. Deaf people and blind people, people with learning disabilities and so on. This emancipation is leading to accomplishments that we didn’t consider possible only a very short while ago. Particularly people with Down’s syndrome currently keep astonishing us all. Many have jobs now, and some serve as city councillor, become artists or are getting academic degrees.
- A second reason is that we don’t know whether we may have a particular need for persons with various conditions such as autism spectrum disorder in the future. It is unlikely that we will continue to communicate the way we do now. Maybe we’ll end up communicating solely via images. We may well discover that those of us who now seem best suited for keeping up in society will fall behind then because they lack certain talents. We need the greatest neurodiversity possible.
- A third reason is that lots of so-called impairments are nothing more but hindrances created by society. Better education and continued emancipation will see many of these hurdles disappear.
- A fourth reason is that technological progress itself will come up with a wide range of solutions to accommodate everyone. Once more humans start integrating technology into their bodies – we are already seeing some of that – there soon won’t be any remaining limitations for those currently still considered impaired.
For more on the topic, see also this article in Nature, by David Cyranoski:
China’s embrace of embryo selection raises thorny questions (16 August 2017).
The Supreme Court will soon deal with two interesting cases concerning housing law and homelessness. The one that has most of my attention is Aster Communities Ltd v Akerman-Livingstone.
Quickly summed up, it is about a man whose specific medical condition (a psychiatric injury as a result of a series of traumatic stressors) led to his local housing authority wanting to evict him from his temporary home, and then rehome him somewhere else. I think I understand his housing authority’s reasoning (which sees this differently, namely as purely following the rules), as well as the tenant’s situation.
In 2010, Mr Akerman-Livingstone was homeless. He has a severe prolonged duress stress disorder (PDSD, which I explain at the bottom of this post). When he went to his local housing authority, the Mendip District Council, the Council accepted that it had a housing duty toward him, a vulnerable citizen with priority needs. It gave him a home.
It is not entirely clear to me whether his disability is generally accepted or not, but that does appear to be so. The Court of Appeal’s judgment states that ‘he is a very sick man’ under 2, but ‘even assuming that Mr Akerman-Livingstone is able to prove his disability to the full’ under 5. In 2010, the District Council agreed that it owed a duty to him as someone with priority needs. This means that the District Council accepted that he has a disability. In 2012, the District Council again accepted that Mr Akerman-Livingstone has this disability, when he applied to them again as he was being threatened with homelessness as a result of the eviction proceedings that are at the heart of this case. So his disability appears to be fully accepted.
Why is he being evicted, you ask? Was he was causing problems for neighbours or had he developed serious rent arrears? No. There were no problems. The underlying reason for the eviction is that the District Council saw his current flat as merely the man’s temporary home. He cannot continue to live in his current home, says the District Council, because it wants to be able to give his current home to someone else who is homeless (likely also on a temporary basis). One can reasonably ask why the District Council does not simply give the homes they offered to Mr Akerman-Livingstone to other persons who are homeless and let Mr Mr Akerman-Livingstone continue to live in his current home. Problem solved, one would think, but real life is rarely that simple.
The problem started when the District Council wanted Mr Akerman-Livingstone to leave his current home and choose a different property where he would then have to move to. Because of his disability, he could not cope with that idea and everything it involved. His uncooperative response was considered ‘rejection of offers of suitable accommodation’ although it is a direct result of his specific psychiatric condition. It is like faulting a blind person for nor passing a vision test, in this very specific case. If Mr Akerman-Livingstone had not had this specific psychiatric injury, he would not have had such a problem coping. Essentially, the man requires peace and quiet and needs to be left in peace. Anyway, the District Council gave up and considered itself released from its obligation to house Mr Akerman-Livingstone.
The District Council then asked the housing association (Aster Communities Ltd, formerly Flourish Homes Limited) to start eviction proceedings against Mr Akerman-Livingstone so that the District Council could give his home to a different homeless person. When the housing association did this, Mr Akerman-Livingstone (presumably someone acting for him as his solicitor) responded that this was discrimination against him because of his disability (the PDSD). That, so he said, was in breach of Section 15 of the Equality Act 2010.
The court had two options for dealing with this: to proceed to a full trial to decide about the discrimination issue and then rule on the eviction or deal with the matter summarily, that is, take the shortcut that takes up a lot less time and money and which is what usually happens in eviction proceedings.
Not surprisingly, Mr Akerman-Livingstone wanted a full trial. Equally unsurprising is that the housing association did not. On 7 June 2013, the sitting judge agreed with the housing association.
To be allowed a full trial, Mr Akerman-Livingstone needed to have a seriously arguable case (that is, a fighting chance to win that case) in the eyes of the judge (judge Denyer). The judge did not think so and ordered the immediate eviction. Mr Akerman-Livingstone’s lawyer filed an appeal against this, but that appeal was rejected on 14 October 2013 by a second judge, at the High Court. Next, Mr Akerman-Livingstone’s lawyer appealed against the decision of the second judge. That appeal was heard in London, at the Court of Appeal, by Lady Justice Arden, Lady Justice Black and Lord Justice Briggs.
The Court of Appeal felt that it needed to answer two questions:
- Should there be a full trial or not?
- What would Mr Akerman-Livingstone have to show to prove his case? That was needed in order to be able to answer the first question because if Mr Akerman-Livingstone’s lawyer would not be able to prove his case, then there is no obligation to hold a full trial to decide about the eviction.
Well, said the Court of Appeal, even ‘if Mr Akerman-Livingstone is able to prove his disability to the full’, if Aster can show that the eviction proceedings are ‘a proportionate means of achieving a legitimate aim’ in the sense of Section 15(1)(b) of the Equality Act 2010, there will not have been unlawful discrimination.
That said, the burden of proof is shared (Section 136 of the Equality Act 2010), continued the Court of Appeal, and that means that Mr Akerman-Livingstone ‘has to do no more than show that there are facts from which, in the absence of some other explanation, the court could conclude that Aster had discriminated against him.’
The Court of Appeal then looked at what the lower courts had done, and at what the European Court on Human Rights (located in Strassbourg, France) had said about related matters and similar cases. The Court of Appeal ended up agreeing with the judge who had sat in the High Court (the second judge, Justice Cranston). It felt that Mr Akerman-Livingstone’s case was not seriously arguable as his interests were not seen as heavily outweighing those of the housing association (proportionality).
The question as to what kind of tenancy Mr Akerman-Livingstone has did come up at some point, but is not important within this context.
First, Mr Akerman-Livingstone would have to show that to be evicted would amount to discrimination because of his condition (the PDSD).
Section 15 (Discrimination arising from disability) of the Equality Act 2010 says:
- 15(1) A person (A) discriminates against a disabled person (B) if—
(a) A treats B unfavourably because of something arising in consequence of B’s disability, and
(b) A cannot show that the treatment is a proportionate means of achieving a legitimate aim.
- 15(2) Subsection (1) does not apply if A shows that A did not know, and could not reasonably have been expected to know, that B had the disability.
This shows that the case hinges on 15(1)(b). 15(1)(a) appears to be the case and 15(2) does not apply. If the housing association and the District Council had not known about Mr Akerman-Livingstone’s disability condition, it would have been impossible for them to be guilty of discrimination, as a person is not able to discriminate on the grounds of something he or she does not know. That was likely never a serious point of debate, as Mr Akerman-Livingstone had been given his current home in 2010 because the disability classified him as a vulnerable person with priority needs and in 2012, the District Council again accepted him as a person with priority needs.
It is often very hard to prove discrimination; that is why the burden of proof is shared (Section 136, Equality Act 2010), which means that the other party also has to show that it did not discriminate:
- 136(2) If there are facts from which the court could decide, in the absence of any other explanation, that a person (A) contravened the provision concerned, the court must hold that the contravention occurred.
- 136(3) But subsection (2) does not apply if A shows that A did not contravene the provision.
The real problem seems to be that it is the Housing Act that appears to be doing the discriminating – puts Mr Akerman-Livingstone at a disadvantage because of his disability – because it does not define ‘refuse’ and appears to contain no provisions for anyone who can be seen as ‘refusing’ an offer of housing when that ‘refusal’ is a direct consequence of a disability. In this case, the ‘refusal’ is an integral part of Mr Akerman-Livingstone’s disability. His condition led to the tick mark in that box that allowed the District Council to consider itself released of its duties toward Mr Akerman-Livingstone (which then in itself led to new duties, as the District Council releasing itself of its duties and starting eviction proceedings against him threatened to make him homeless again).
The man requires peace and quiet, not yet another upheaval and series of stressors. Moving home is one of the major life stressors, and the mere thought of having to decide on where he wants to move to next apparently already is too much for him. Moving home may aggravate his condition.
Frankly, I believe that the housing authority (the District Council) and housing association would have done a better job managing everyone’s resources including their own if the District Council had simply housed someone else in the properties offered to Mr Akerman-Livingstone and allowed Mr Akerman-Livingstone to continue to live in his current flat, as I already mentioned. Generally speaking, though, any party is free to choose to either carry out bad management or good management if it has the right to carry out that management and does not infringe on other parties’ rights.
There is another twist to the story. The head lessor is not Aster Communities Ltd but a property developer and the property developer apparently has asked Aster to deliver up the premises without any tenants in them. If that is the case, then the argument that the rights of other homeless persons are just as important as the rights of Mr Akerman-Livingstone might no longer apply (although the District Council’s new housing duties toward Mr Akerman-Livingstone appear to be less than what they were in 2010).
If it is indeed the case, however, that the District Council wants to evict Mr Akerman-Livingstone from his flat so that it can give the flat to someone else who is homeless, then in theory, it could end up rehoming Mr Akerman-Livingstone in the same flat from which he is being evicted (and that might even be with the head lessor as his new landlord, instead of Aster Communities Ltd).
Moreover, perhaps the District Council could have foreseen this course of events – in view of the man’s specific medical condition – when it housed the man in 2010. It could have prevented it. It could have given him a home it considered long-term housing and not just temporary. (It may not have been in a position to do that; it depends on the circumstances.)
It appears to be the housing and homelessness charity Shelter that is instructing the lawyers acting for Mr Akerman-Livingstone.
I am interested in the response from the Supreme Court. Decisions by the Supreme Court can have far-reaching consequences.
I emphasise that the above is just a general description of the background of this case. I also add that, unlike what the public may often think, justices and judges rarely have the freedom to apply their personal view and sometimes are forced to decide in a way they wish they did not have to. They have to take other cases into consideration, for example, and apply the law consistently.
PDSD stands for Prolonged Duress Stress Disorder, but this is an outdated phrase. The correct name of the condition is Complex Post-Traumatic Stress Disorder or Complex PTSD. The current Diagnostic and Statistical Manual of Mental Disorders (DSM-5) considers PTSD a condition related to trauma and stressors, and includes Complex PTSD (or PDSD). DSM-5 was published on May 18, 2013. The previous edition of the DSM included PTSD but not the variant Complex PTSD, so I understand.
Someone with PTSD, complex or otherwise, can either be the victim or the witness of trauma. More specifically, it can concern:
1. Directly experiencing the traumatic event(s);
2. Witnessing the event(s);
3. Learning that the event(s) occurred to one or more close relatives or close friends;
4. Experiencing repeated or extreme exposure to aversive details of the event(s).
I guess you could see someone with Complex PTSD as someone who has been hit with a baseball bat very badly, figuratively speaking, over and over and over, again and again, and who never got the chance to recover. That is just my lay person’s view, however.
See also this short later post.