Petition to make neurodiversity a separate protected characteristic in the UK

I promised to do this a while ago, and now I'm finally getting around to it. The petition will be on petition.parliament.uk. The character counts are extremely limited, so it was difficult to provide the needed information in the available space. Please let me know what you think of the text below, because this is for all of us and not just me. Note that the information I have provided (see the links) is also from a government website, so they can't really refute that.

The title of the petition is:

Make neurodiversity a separate protected characteristic.

The background I have written is:

Neurodivergent individuals, e.g. those with autism or Tourette's, often suffer discrimination due to their condition, whether or not their condition amounts to a disabilty. Making neurodiversity a protected characteristic in itself, separate from disability, would be a step in the right direction.

Here are the additional details I have written:

Neurodivergent individuals are denied both fair treatment and mental health services at a higher rate than in the general population. As a result, the unemployment and suicide rates in the neurodivergent group are disproportionately higher as well. Presently, they are obliged to prove that their condition amounts to a disability in order to be legally protected from the discrimination and mistreatment to which they so often fall victim. Further info: tinyurl.com/y829k3oh & tinyurl.com/yavfxmod.

PS I need 5 emails addresses for supporters of the petition, so if anyone is a UK citizen and willing to "officially" support the petition, please PM me. I can likely get some from people I know, but maybe not all five that I need (I don't know many people).

Thanks.

(Edited based on comments received)

Parents
  • Neurodivergent individuals are denied both fair treatment and mental health services at a higher rate than in the general population.

    I find this sentence a bit confusing. Could you perhaps provide some sort of citation? Has it been proven to be true with research or surveys? Your definition of neurodiversity seem unclear as well (you only give two examples). If you consider "depression", "anxiety", "schizophrenia", "OCD", "ADHD", etc. all to be types of neurodiversity, then I don't think it's true that neurodivergent individuals are denied mental health services at a higher rate than in the general population. There probably is a much higher ratio of neurodivergent individuals currently in mental health services than the general population in mental health services (i.e., the majority of people currently in mental health are neurodivergent)

  • I'm feeling a bit bad now that DragonCat16 may have over-reacted to my early thoughts. I mentioned that 'bullying' appeared three times because the text could have given the impression that that was the only thing that being a protected characteristic should change, so suggested mentioning discrimination in services and in employment, which happens; I haven't looked for formal evidence. Now the word has gone altogether, which is a shame because I know lots of people relate to it.

    And it was me that brought up mental health - Autistica found it was a top concern. I think suicide may have rightly been in the first draft. The suicide risk is usually quoted as 9 times that in the general population. I have had conversations about whether mental distress is included in neurodiversity, and still maintain that psychosis and depression should be seen as temporary, functional conditions, not a neurodivergence or neurominority. I haven't asked enough people with experience of psychosis whether they would identify that way. Tourette Syndrome on the other hand, which I suggested despite knowing little about, is another lifelong spectrum of differences, and similarly has stereotypes that are different from the reality.

    I suppose I should have said 'appropriate mental health services'. Many autistic people find themselves in the mental health system all the time, but in my case among many others, getting misunderstood and receiving inappropriate, ineffective and damaging treatment. I'd see that as an example of mistreatment by services and discrimination. An analogy I'm thinking of is if in Wales, the only counsellor or psychiatrist you could see only spoke English, which could be bad for a significant minority. Most clinicians seem to unthinkingly define positive mental health as being NT.

    The understanding of what is included in 'neurodiversity' may affect whether the petition succeeds. After some confusion about cross-party moves to make 'gender identity a protected characteristic.. in place of gender reassignment', MPs may think self-identification or self-certification would be a problematic issue. (I don't know much about the issues around gender identity so don't want to get into it. The commitment was in Labour, LibDem and Green manifestos, but seemed to provoke a significant transphobic reaction based on misunderstandings such as that sex would no longer be a protected characteristic. All I'm saying is that diagnosis or self-identification as autistic might be seen as a potential legislative conundrum, despite the fact it makes sense for trans people.)

    'step in the right direction' now seems weak, and makes the proposal sound incomplete. I was more thinking of something like 'We ask that Parliament [or Government] make neurodiversity a protected characteristic in itself, separate from...'. I also have come to favour 'identity-first' language for autistic people: http://journals.sagepub.com/doi/abs/10.1177/1362361315588200

    Really just my opinion, and not worth more than a penny.

  • It's still very much in the draft stage, so don't worry if something still seems to be missing. What is difficult is to fit everything into the very limited available space. Perhaps it should be more of a personal appeal, like the petition for better autism training for health professionals.Right now, I worry that it's too dry and impersonal. I'm really surprised that more people haven't voted in the poll, considering the enthusiasm the idea got when I brought it up a while ago.Maybe everyone is just enjoying the summer weather and not frequenting these forums.

    I can add the word "bullying" back in, but I thought it would be covered by "denied fair treatment". The issue is the space allowed more than anything else.

    As for the conditions included under "neurodiversity", there is simply not enough room to include the comprehensive list. There are lists in the referenced documents, but unfortunately they do not match exactly. (Again, the limited space prevents me from providing the full titles of those documents.) I do believe that autistic people represent the majority of neurodivergent individuals, which is why I mentioned that particular condition specifically. Personally, I would take an inclusive approach to what exactly consititutes "neurodiversity", because any type of neurological condition, learning disability, developmental disorder, and even illnesses or brain injuries acquired later in life, potentially leaves one open for stigma and unfair treatment from others, and that is exactly what this petition is supposed to address.

    As for "identity-first" language, again, the language I used was based on the amount of space. I think the language used is a matter of personal preference (as is made clear by the link you provided), and also that language itself is not as important as the attitude behind the words that are used. I tend to identify myself as "on the spectrum", but I do acknowledge that "autistic" is probably more of a part of one's identity than many other possible adjectives, because it describes how someone's brain is wired, which makes it completely inseperable from the person.

    I didn't really know at first whether it was wise to mention mental health services because it would imply that all autistic people need that, but so many people on this site have been told that mental health professionals in their area do not cover autism, so have been denied treatment that would be given to non-autistic individuals (which is, after all, the very definition of discrimination). Obviously, being denied care in this area potentially leads to a higher incidence of depression and suicide, over and above that caused by the treatment received from others because of the condition itself. I believe that the condition of being autistic does not by default make someone suicidal; it is the mistreatment from others routinely experienced by autistic people on a day-to-day basis that can cause depression and can sometimes ultimately lead to suicide. That makes it even more important that autistic people be provided appropriate care, and even more of a tragedy that they are often denied that care. There aren't even enough practiitioners capable of diagnosing autism, which is why people have to wait for years for even an identification or acknowledgment of their condition, and then some who are obviously autistic are told that they aren't, just because the person they approach for diagnosis doesn't have sufficient knowledge. And let's not even mention the difficulty some people have being referred for a diagnosis in the first place.

    I used the phrase "step in the right direction" because I don't want to claim that making neurodiversity a protected characteristic will automatically and immediately stop all unfair treatment. It won't, but at least people will be able to claim some kind of protection under the law, whereas now, there is no such protection without proving disability, which in some instances is difficult to do, given the medical model of disability in the Equality Act, which is in contrast to the more fair and realistic social model of disability. which reflects the difficulties that we have to face every day.

    I really do want this petition to succeed, so I am considering whether to relate a personal story instead of providing dry facts. The dry facts can be provided in links if people want further information. I could draft a much more comprehensive document full of references, and provide a link to that in the petition information. Then space would not be an issue and a personal story could be the primary focus of the petition. People tend to react more emotionally to a personal story than to a collection of dry facts. The only question is whose story should it be.

    Please keep the feedback coming.

Reply
  • It's still very much in the draft stage, so don't worry if something still seems to be missing. What is difficult is to fit everything into the very limited available space. Perhaps it should be more of a personal appeal, like the petition for better autism training for health professionals.Right now, I worry that it's too dry and impersonal. I'm really surprised that more people haven't voted in the poll, considering the enthusiasm the idea got when I brought it up a while ago.Maybe everyone is just enjoying the summer weather and not frequenting these forums.

    I can add the word "bullying" back in, but I thought it would be covered by "denied fair treatment". The issue is the space allowed more than anything else.

    As for the conditions included under "neurodiversity", there is simply not enough room to include the comprehensive list. There are lists in the referenced documents, but unfortunately they do not match exactly. (Again, the limited space prevents me from providing the full titles of those documents.) I do believe that autistic people represent the majority of neurodivergent individuals, which is why I mentioned that particular condition specifically. Personally, I would take an inclusive approach to what exactly consititutes "neurodiversity", because any type of neurological condition, learning disability, developmental disorder, and even illnesses or brain injuries acquired later in life, potentially leaves one open for stigma and unfair treatment from others, and that is exactly what this petition is supposed to address.

    As for "identity-first" language, again, the language I used was based on the amount of space. I think the language used is a matter of personal preference (as is made clear by the link you provided), and also that language itself is not as important as the attitude behind the words that are used. I tend to identify myself as "on the spectrum", but I do acknowledge that "autistic" is probably more of a part of one's identity than many other possible adjectives, because it describes how someone's brain is wired, which makes it completely inseperable from the person.

    I didn't really know at first whether it was wise to mention mental health services because it would imply that all autistic people need that, but so many people on this site have been told that mental health professionals in their area do not cover autism, so have been denied treatment that would be given to non-autistic individuals (which is, after all, the very definition of discrimination). Obviously, being denied care in this area potentially leads to a higher incidence of depression and suicide, over and above that caused by the treatment received from others because of the condition itself. I believe that the condition of being autistic does not by default make someone suicidal; it is the mistreatment from others routinely experienced by autistic people on a day-to-day basis that can cause depression and can sometimes ultimately lead to suicide. That makes it even more important that autistic people be provided appropriate care, and even more of a tragedy that they are often denied that care. There aren't even enough practiitioners capable of diagnosing autism, which is why people have to wait for years for even an identification or acknowledgment of their condition, and then some who are obviously autistic are told that they aren't, just because the person they approach for diagnosis doesn't have sufficient knowledge. And let's not even mention the difficulty some people have being referred for a diagnosis in the first place.

    I used the phrase "step in the right direction" because I don't want to claim that making neurodiversity a protected characteristic will automatically and immediately stop all unfair treatment. It won't, but at least people will be able to claim some kind of protection under the law, whereas now, there is no such protection without proving disability, which in some instances is difficult to do, given the medical model of disability in the Equality Act, which is in contrast to the more fair and realistic social model of disability. which reflects the difficulties that we have to face every day.

    I really do want this petition to succeed, so I am considering whether to relate a personal story instead of providing dry facts. The dry facts can be provided in links if people want further information. I could draft a much more comprehensive document full of references, and provide a link to that in the petition information. Then space would not be an issue and a personal story could be the primary focus of the petition. People tend to react more emotionally to a personal story than to a collection of dry facts. The only question is whose story should it be.

    Please keep the feedback coming.

Children
  • I think one or more personal stories would be good, but they don't need to be included in the petition unless it's really had mainstream news coverage. There could be a supporting web page for the campaign.

    the condition of being autistic does not by default make someone suicidal; it is the mistreatment from others routinely experienced by autistic people on a day-to-day basis that can cause depression and can sometimes ultimately lead to suicide. That makes it even more important that autistic people be provided appropriate care

    In most cases, yes.

    I hope more people comment or vote. Maybe they haven't seen this yet.