Things which make my life easier

I’ve already written about this twice but my condition changes and so does my life and what I use to help me get through the day so I wanted to do another update.  You may also want to check out the following posts:

Things which make my life easier: Post 1

Things which make my life easier: Post 2

Reading with hand pain

  • Having carers makes a huge difference to my life
  • Home adaptations through the council:
    • Electric door opener for the front door – I have a fob button which opens the door so I don’t damage my shoulder or hand when I try.  It also means I can let people in without having to get up.
    • Electric curtain and window openers
    • This all results in a lot of remotes which I have tied on to my trolley so they are always to hand.  I also use remote controlled plug sockets for lamps.
  • Understanding friends
  • Twitter
  • My electric wheelchair, manual wheelchair and crutches
  • My diary – not only does it keep track of appointments and carers, I use it to track the things I need to do to maintain my health eg exercise, seeing people, using my brain, being creative, getting outside, getting rest etc.
  • Connecting with nature
  • Frozen meals; I often get my carers to do a batch of macaroni cheese or similar and we put it in takeaway style tins.  This means I can have comfort food on nights when we don’t have time to cook from scratch.
  • Riser recliner chair
  • Chewable toothbrushes and baby toothbrush.  The latter is lighter than most electric toothbrushes and has a smaller head.  I struggle with the vibrations causing hand pain but because it is smaller, I can just about cope with carers cleaning my teeth for me.  When my jaw pain is bad I use mouthwash and if my legs are bad, the carers leave the cup of mouthwash on my trolley by my bed along with a plastic cup to spit into.
  • 4Head is a roll on headache treatment which works by slightly numbing the area and thus breaking the tension cycle.  I use it when my shoulders are painful as this causes me neck pain which causes a headache and results in me holding my shoulders badly.. So I rub it on my neck and shoulders to help me relax them a little and interupt that cycle.
  • Hot rox for keeping warm.  I rotate mine between my hands and my legs when I’m in the wheelchair.
  • I drink a lot of juice and in the winter it was getting far too cold when I went out so my juice bottle now has a very thick, snuggly sock for it to live in.  This keeps my juice a little more drinkable in winter.
  • Slippers you can sleep in mean you aren’t having to put them on and off and on and off, especially helpful if, like me, you curl up in chairs.  Note, whilst I love having slippers I can sleep in, my physio insists I should wear ones with more structure.  I don’t because each time I sit down with my legs raised (which is basically every time I sit down) they fall off.
  • Portable foot rest.  I used this more when I was on crutches – it is portable and means when you’re in meetings or on chairs where your feet don’t quite touch the floor, you can rest them and reduce the leg pain.
  • Label maker
  • Wheelchair cosy and blanket
  • Prepaid prescription card.  I’m not eligible for help with prescription costs but the prepayment card means I only pay £100 a year rather than the £80-100 a month it would cost me otherwise.

What makes your life easier?

 

Disability and contraception

“I have the jab so I can’t be blamed for getting pregnant”: Contraception and women with learning disabilities

Michelle McCarthy (pdf)

The very fact that there is a paper entitled this is horrific.  And really shouts about the need to discuss disabilities and contraception.

This is an area which is very entangled with forced sterilisation and issues of consent but I do not believe that either of those should prevent the conversation about disability and contraception.  NB, I have already written about my experience of disability and periods so this is more focused on contraception as birth control.

I’m assuming here that the person in question has capacity to consent to using contraception, whether it’s for safer sex or for other reasons.

Having read about the topic for a while now, there feels like there are a few sections to this debate: coercion to use certain types of birth control, unwillingness to provide birth control and having certain types of birth control off limit.  This is certainly backed up by an Open University report into contraception and learning disabilities:

In some instances women made active and informed choices about contraception that enabled them to control their reproductive futures. In other cases women had used contraception because they felt they had to, or had been coerced; consequently they also had little say in the type of contraception they used. Some of the women also told us they used contraception as medication to regulate menstruation or alleviate menstrual pain.

Coercion to use birth control

As seen in the quote at the top of the post, there can be a pressure (overt or covert) for certain people to use a method of contraception that is daily or long lasting (as opposed to condoms etc which you use at point of sex).  This seems to be strongly related to this idea that women with disabilities should not get pregnant.  This seems particularly evasive for women with learning disabilities.  A group of people who are possibly more vulnerable to coercion.  This is despite evidence that shows a persons IQ is not an indicator of how good a parent they will be.  This attitude is echoed in experiences of people with disabilities who have been pressured into a termination.

There is also the fear around high rates of abuse of women with disabilities, particularly those with learning disabilities, and the fear of a person getting pregnant following abuse.  However this doesn’t address the issue of abuse itself or STIs or psychological impact.  We should not use the risk of abuse to control women’s bodies.  We should be talking to women about what is appropriate in relationships, what to do if things become inappropriate and what puts you at risk of STIs and pregnancy etc.

Two women in the Open University report, both with high support needs, were coerced into having the contraceptive implant when they had lived in a care home.  This is echoed in other literature I’ve read; the very strong “suggestion” that the place at the care home will not be available if they don’t use birth control.  There are other cases discussed where women were put on birth control because they weren’t believed when they said they weren’t having sex.

Coercion can also take the form of discussing the benefits of birth control – such as no periods – whilst not discussing the pregnancy aspect.  This has been used to get someone to use birth control due to fears of risky behaviour.  Passive acquiescence is another form – the patient not being fully informed and the idea of doctor knows best being played on so the patient lets the professional make the decision.

Unwillingness to provide birth control

When I go to the doctors about birth control, there is a general assumption that I do not also need condoms.  When I was not visibly disabled, I would be offered condoms or at least reminded that the pill doesn’t protect against STIs.  Similarly when I was not visibly disabled I was reminded that the pill is ineffective if you’ve been sick, had diarrhoea or are on antibiotics.  This no longer happens.

A lack of accessible literature on birth control and other topics relating to sex education or an unwillingness by medical professionals to take the time to explain these issues is one way in which society is undermining access to birth control.

Another is the assumption that disabled people do not want children and so the conversation is steered in a certain direction.

Off limits

Obviously certain kinds of birth control may not be compatible with certain health conditions and I understand the importance this.  However it seems that there are some medical professionals who filter their information based on the person having a disability eg not talking about the pill to people who have a condition which may cause them to forget to take it.

Taking a personal example for illustration, I would really like a hysterectomy.  I will never have children and having my period is difficult and humiliating for me.  But based purely on my age, that is out of the question.  Obviously this isn’t discrimination because of my disability but other options are out so surely this should at least be a consideration?

As a second option, I would go for the coil but they won’t give me anaesthetic to get it inserted so that is out for me.  Note, the only reason I can’t have the coil is my disability which means I can’t have it inserted without anaesthetic.  There is no greater risk for me to have the coil than for me to take the pill.

And the pill was next on the shopping list of choices…  Whilst I’ve finally found one that is mostly ok so far it has led to a lot of weight gain and I have tried five different types to get here.  The other main options would be the injection, which they don’t want to give me due to my health, and the implant which has low odds of stopping periods compared to the other options.

There are other ways of making birth control off limit to women with disabilities without having to say no.  For example if you can’t get to the doctors – my surgery don’t do house calls, won’t prescribe the pill by phone and obviously the other options are out if you can’t get to the surgery.  My surgery is a group of surgeries and fitting the coil is only carried out at one of these.  There is the inaccessibility of doctors and sexual health clinics and the inaccessibility of information.

All of this echoes prejudices which people carry about disabled people and sexuality, whether consciously or not, and needs challenging.  In order to have a healthy sex life, everyone needs to have access to contraception and information.

End note: The Open University research concludes by acknowledging that whilst little is known about the contraceptive choices of women with high support needs, almost nothing is known about those people who do not have capacity to consent.

Dating with a disability

So first off, I don’t feel very qualified to talk in too much detail about this.  Since considering myself disabled, I have been on one date.  However, a quick picture of that date will be a good way to kick start this.

I went on a date with a person I met online who seemed interested and intellectual and open minded.  She seemed to be of similar political views and attitudes as me.  All great.

At that time, whilst I was starting to consider myself disabled, it was a lot less obvious to people.  I wore wrist and ring splints and unless you knew me, you wouldn’t have known I was in pain and tired.  My wrist splints were covered in arm warmers (excellent for hiding medical beige splints and stopping the velcro from sticking to everything).

Back to the date.  I hadn’t told her I had a disability because at that stage it didn’t seem especially relevant.  It wasn’t going to interfere with my date after all.  And we had a nice time.  We wandered around an art gallery making general conversation and every few minutes she would sneak a glance at my hands.  Not once, not twice, but repeatedly throughout the hour or two we were together.  And I get it.  You don’t see many people with ring splints, or even wrist splints for that matter.  But you have two options on a first date with someone you found online; you ask them about it or you ignore it.  And on a first date with someone you found online I think either are ok options providing you ask sensitively of course.  I don’t find it ok to have someone clearly desperately trying to figure things out, not being very discreet about it and not just politely asking.  This is going to be one of those things where different people feel differently though.

As I’ve discussed a lot, disabled people aren’t generally seen as part of the dating pool and as my wheelchair is in your face disabled, most people I meet face to face will not consider me to be a sexual being.  In addition to this, disabled people are more likely to be isolated and we can’t always access the places where you meet prospective partners (bars, pubs, workplace…).  One night stands are not straightforward if you have a condition which affects sex.  Most people, when looking for a one off thing, do not want to be sat down and told about the possible hip dislocations and vaginismus and so on before getting on with things.

So online dating to the rescue?  Well.  Online dating opens up a lot of issues.  Firstly, and slightly off topic, being bi and trying to date online isn’t straightforward.  On a lot of the big websites, you cannot be searching for both male and female people.  When I approached match.com about this years ago, they told me to set up two accounts.  There are also a whole lot of trans issues around this male or female approach.  Anyway.

Another, more on topic, issue with finding a website is the “disabled online dating” sites.  Websites entirely for people who are disabled to find love.  Which presumes that because you are disabled you only want to date disabled people, or only other disabled people would want to date you.  And I’m not saying I don’t want to date a disabled person but I don’t want to have to choose it at the expense of all non disabled people.

Let’s say I have found a website and am setting up a profile, do I “declare” myself disabled in my profile? If not, when do I tell someone?  Obviously this is a bit easier if you’re on a disabled dating site.  But given that a vast number of people appear to be scared of disability, would I actually get any response if I told people in my profile?  Or would I get the wrong kind of attention?  In some ways, my disability is really good at ruling out people I don’t want to know but it can be quite disheartening.

At this stage in the imaginary process, I haven’t even activated my account.  If I wasn’t disabled, then that would have been done by now.  Once activated, there is then the tiring emotional labour of connecting with strangers and sending messages and that is draining for most people, let alone those of us with mental health issues and low energy levels.  You also run the risk of having horrible messages sent your way and having to deal with the emotional impact of that as well.

Ok, I’ve found someone I want to meet up with and I’ve told them about the disability, what then?  Well, we have to figure out what we want to do or where we want to go and how feasible that will be for me.  We have to figure out when but weekends everywhere is stressfully busy and evenings I am asleep.  On top of which my pain and energy levels fluctuate.  And my evening care means I have to be put into my pjs at 5pm or with a lot of prior arrangement a bit later but I still have to be home by a certain time.  I am a 30 year old with a curfew.

If I was going on a date today, I would be wearing wrist splints, ring splints, knee splints, ankle splints and using an electric wheelchair.  If we were going for a drink I would need a straw.  If we were going for food I would need it cutting up and I’d need to use my fingers or my special spoon.  I would almost certainly need either my date or someone else to help move furniture and stuff and depending on the system, I could have to send my date to the counter to order and pay.  If we decided to go to the cinema, we would have to check in advance that the disabled seats were available and that the lift was working.  I’d have to prebook a wheelchair taxi for each end of the date and they are known for not turning up and are only available at certain times of the day (eg you can’t get one in york during school drop off or pick up time…).

And all of this presumes that I have managed to find someone who seems compatible, is ok with going on a date with a bisexual, disabled woman and lives close enough that we can meet in the town I live in or the person is willing and able to travel.  This is a whole lot of supposing.  And this is one reason why I have only been on one date since becoming disabled.  To be honest just writing this has been exhausting, let alone trying to live it…

None of this is me saying it’s impossible to date if you have a disability but I wanted to make non disabled people aware of just some of the challenges involved.  There are other complications when you’ve been dating someone for a while and these are similar to those faced in friendships.

The right to die?

Euthanasia and doctor assisted suicide are huge topics for one little blog post so this will not be in depth.  What I hope to do instead is share a few facts, figures, anecdotes, opinions and my own personal feelings on the matter.

This can be a very sensitive subject and whilst I invite comments on my blog, I would ask that you bear in mind that I, and other commenters, are people and we are entitled to our views on this and I’d ask that you use your words kindly.  Disagree but don’t fight.

For me, the key issue is the paradox of being physically disabled and mentally ill.  I have been suicidal many times in my life due to mental illness and obviously it is complicated but for me, suicide is a safety net, a way out if things get really bad.  If it wasn’t for my limitations due to my physical disability, I would still have the choice to kill myself.  Being physically unable to kill myself takes away an option I have always had.

Euthanasia does not exist in isolation, it is part of a spectrum around end of life issues:

  • Do Not Resucitate orders
  • Advanced Directives – documents written by the individual to make their wishes for care clear in the case that they are no longer able to speak for themselves
  • Withdrawing treatment
  • Refusing food and drink
  • Assisted suicide – self adminstration of doctor prescribed medication
  • Voluntary euthanasia – most usually an injection but the key is that it is directly carried out by a doctor
  • Non-voluntary euthanasia – where the patient’s consent is unavailable, illegal in all countries
  • Involuntary euthanasia – without asking consent or against the patient’s will, in most cases this is considered murder

For the purpose of ease of writing and reading I am using assisted dying to encompass assisted suicide and voluntary euthanasia.

Let’s start by looking at a few of the concerns around assisted dying.  Like abortion, the choice to die debate appears to threaten the existence of disabled people, seems to suggest a life with a disability is not worth living and ignores the social context around disability and illness.  There is also a concern that focus and money spent on assisted dying will be taken away from improving end of life care and those things which increase quality of life.

However, it is important that disability itself is not considered enough to qualify for assisted dying.  And this is clear in the legislation which currently exists.  Most of this focuses on unbearable suffering, terminal illness and incurable illness.  The concept of unbearable suffering is one in which the patient has to determine when that level is reached.  So whilst disabled people may chose assisted dying because of their disability, it is not enough to be disabled.  This is essential as part of any safeguarding criteria, as is patient consent.

Associated with this is the concern that if assisted dying is allowed then it will make it easier for legislation which allows for killing disabled babies or people with severe disabilities, that is to say non-voluntary or involuntary euthanasia.  Evidence from Oregon, who’ve had access to assisted dying for over 20 years, shows that fears around slippery slopes and other risks are unfounded.

Another worry is pressure to “choose” assisted dying.  This does feel like a very relevant discussion point at this time when Trump is destroying medical care for many disabled people in America.  Without medical and social care and support, disabled people will suffer reduced quality of life and are also strongly receiving the message from the government that they are not valued citizens.  Internalised oppression and ideas about disability can also pressure people.  These might include feeling like a burden, feeling like you are financially draining your family and feeling like you can’t contribute to society.

I don’t really have a counter argument for that but I do think it must be part of any safeguarding procedures and it feels really important to gather evidence about the reasons why people choose assisted dying.  This is already the case in many parts of the world which allow this choice and it is imperative that this data is collated and reviewed and action taken if key social factors are identified as pressuring decisions.

Where assisted dying is legal, there are tight criteria around who is able to access these options and this is a crucial aspect of safeguarding when it comes to assisting a person to die.  These include a cooling off period, multiple medical practitioners, being able to stop at any point and there being a waiting period for those people who have just become ill or impaired.

As we saw with abortion, it is possible to advocate for assisted dying for those who wish to seek it whilst also valuing disabled people’s lives.

A key issue for me is around the option of assisted dying playing a role in prolonging people’s lives.  It’s not as contrary as it sounds!

Annie Lindsell, who challenged the law on voluntary euthanasia, explained that unless she had the reassurance of being given help to die, she would have to do so whilst she was still able without help.  Thus her life would be shortened.

By 2014, over 200 British people had made the journey to Switzerland to end their life.  This takes them away from family and friends, means they have to end their life earlier whilst they are still able to travel and there is a financial cost as well – the cost of the service as well as travel and accommodation.  For many people, this will not be an option they can afford.  This leaves them with three options; continuing to suffer, attempting suicide alone, attempting suicide with someone’s help.  The last two of these come with risks of unsuccessful suicide attempts and the health issues that can come with that.  The last comes with the additional risk of the assisting person being prosecuted.  This also adds a layer of discrimination – only those who have enough money can choose a dignified death.

The evidence from places like Oregon shows that although a majority of people want access to assisted dying, most will not use it.  The comfort of having the option is itself enough to ease anxiety and some of the suffering.  Indeed, I think it’s only about half of the people who get the medication or the go ahead for assisted dying do not follow through.  They live with the knowledge that they have a way out and this can be incredibly freeing.  Indeed, one study reports that pain, depression, anxiety and fear of dying were higher in those who had not requested assisted dying.

Finally I would like to pose an area of assisted dying that a lot of people would agree is ethically sound.

“As he lay comatose on his deathbed in 1936 George V was injected with fatal doses of morphine and cocaine to assure him a painless death” – Jo Cartwright

There is a great chapter in the book Assisted Dying by Reverend John Cartwright about his view on faith and assisted dying.  In this he says “My conclusion is that God approves of helping people to die when the person being helped is near to death, is in great distress and their death is the unavoidable consequence of trying to alleviate pain.”

This introduces us nicely to the Doctrine of Double Effect, the practice that aided George V’s death.  The idea that if a dying person is in pain, it is ethical to provide pain relief at levels which are known to increase the risk of death.  The assumption in these situations is that relief is preferable to a longer, painful life.  It’s obviously a lot more complicated and nuanced but that’s the basics.  From the perspective of God, he suggests that a benevolent God would not wish to prolong the suffering of someone who is inevitably going to die very soon anyway.  This then asks, if the doctrine of double effect is considered ok, what implications does that have on the ethics of assisted death?  Are we to punish people in severe levels of pain, who wish to die, because they are not yet close enough to death?

We expect autonomy in every other part of our life so why can’t we expect it in our death?

Disability and abortion

Have I already written about this? I know I touched on it in the post around sterilisation…  Hmm… maybe I haven’t… I think maybe I was avoiding it because it is such a huge and complex area…

Firstly, I am pro choice.  I believe that women have the right to chose what happens to their body.  For me, this is not a case of not valuing a fetus, it is a case of valuing the woman’s life more.  I do not believe making abortion difficult will stop abortion.  Making abortion illegal will just make abortion more dangerous.  It will not stop abortion.

Secondly, language around this issue is full of emotion and controversy and I have done the best I can.

Thirdly, this is not a discussion about the morals and ethics surrounding abortion itself.  It is about abortion and disabled or potentially disabled fetuses.  I am making an assumption, for this post, that the society in which this debate is taking place allows women access to abortion.

Ok, now we’ve clarified that, what does abortion have to do with disability?

Here I am considering the right to abort a fetus which has a disability.  The argument against screening for disability and then acting on the information is that it is a form of eugenics. As we’ve already seen on this blog, the eugenics movement in the early 1900s had a profound effect on disabled people and their rights and their lives.  Here we are not sterilising or killing people who have a disability but instead are stepping in earlier and preventing a potential disabled person from being born.  Society is allowing the reproduction of people with “undesirable attributes” to be stopped.  This underlines the idea that all disability is bad and that everyone is better off not being disabled.

Adrienne Asch is one writer who finds abortion for “fetal indications” profoundly troubling. This is not because she regards fetuses as persons and abortion as seriously morally wrong. Her view is that abortion is morally acceptable if the woman does not want to become a mother. However, she distinguishes between abortion to prevent having a child (any child) and abortion to prevent having
this child. Why, Asch asks, would someone who wants to be a mother reject this pregnancy and this (future) child because of one thing about that child: that is, that he or she will have, or is likely to have, a disability? She believes that such rejection is likely to stem from inaccurate and prejudiced ideas about what it is like to have a disability or to parent a child with a disability.

Bonnie Steinbock

It is important to know a bit about prenatal screening and the information available to parents who are going through this process.  There are two parts to prenatal diagnosis; the first is screening which gives parents and idea of how likely it is their child would have a particular health problem, the second is then a definitive test.  The first is non invasive, consisting of scans and/or blood tests and looks for things like infectious diseases, Down’s syndrome, or physical abnormalities.  The second is invasive and carries certain risks but gives a more certain yes or no about whether the fetus has a particular condition.

One really important thing to keep in mind here is that these prenatal tests do not tell a parent that their child will be born healthy or without disability.  There are many many many conditions or illnesses which cannot be screened for.  This then creates a potential for people with certain disabilities being considered less worthy of life.  There is a question of who decides what disabilities are screened for and what are the consequences of that (obviously science and technology plays a part but this is still all guided by people).  For example if most fetuses with Downs Syndrome are aborted, we end up in a situation where there are fewer people with Downs and those that are alive may feel they are being told by society that they shouldn’t be.

Another consideration is the severity of a disability, just because someone tests positive for a condition does not mean they will be disabled by it.  Take my condition, you can be severely disabled by it or you can go through life without too much impact.  This approach is saying that anyone with x is inevitably going to have a difficult life rather than considering the severity of the condition and the society around that potential person.  A millionaire with x will have a very different experience than someone who is unemployed – money buys support and equipment and such things.

The language used in the debate also assumes both that all disabilities are equal and the same and that there is no good life available for a person with a disability:

Disability in the context of a termination decision for a wanted pregnancy has been described as a “tragedy” and a “defect”— using the language of pain, suffering, and devastation. The focus is on the potential suffering a child with a disability will allegedly experience and inevitably bring on parents and other siblings. The fetus with a disability that is survivable post- partum is often considered damaged.

The paradox of disability in abortion debates: bringing the pro-choice and disability rights communities together

A key argument against abortion of disabled fetuses is that if society changed, there wouldn’t be a problem for that disabled person.  As such, abortion is removing the need for society to change how it sees and supports people with disabilities.

But, what if the parents are in a situation themselves where they cannot cope with the additional things that come with having a disabled child.  Is it then fair to insist they have that child and suffer the detrimental impact on their lives as well as the child’s?  Here I’m thinking about additional financial burdens, especially in cultures where health costs are extortionate and parental leave non-existent.  Whilst it is nice to consider what would be ethical in an ideal world, we do not live in an ideal world.

For Lippman, the rhetoric of choice is meaningless; to knowingly carry to term a baby with Down syndrome “cannot be a real option when society does not truly accept children with disabilities or provide assistance for their nurturance”

Keeping the backdoor to eugenics ajar

A further consideration is those parents who know there is a chance of an inherited condition who want to get prenatal screening not so that they can have an abortion, but so that they can mentally and physically prepare.  Prenatal testing and finding out the child may have a disability does not mean that parents will inevitably chose to terminate the pregnancy.

Whilst it’s easy to talk in examples, it is unfair in some ways.  We all find ourselves in situations where there is no good answer and stigmatising parents who have made incredibly tough decisions, whatever they decide, is not helpful to this debate.

“All decisions about screening and termination are difficult and can only be made by those people who have to live with the consequences”

-Tom Shakespeare

Shakespeare distinguishes between population level eugenics (such as that during world war 2 and forced sterilisation) and individual level eugenics (those decisions made by individuals and families).  I find this an incredibly helpful way of thinking about things.  I am absolutely against population level eugenics but I know that if I got pregnant, I would want to have access to abortion.  This is because there is such a high chance that any child of mine would have my genetic condition and whilst I do have a high quality of life, I don’t want someone else to suffer through some of the painful and difficult things I’ve been through.

Shakespeare also points out that whilst screening and access to abortion is not the same as historic practices, the culture and context in which decisions are made can promote the same outcomes.  That is, if you are making a decision to have a disabled child in a society which does not value disabled people and which is not set up for or accomodating of disabled people then that free choice is very different to a free choice made in an inclusive society.  Similarly, whilst parents have the choice about whether they get prenatal screening, there has become something routine about doing so, it is considered part of the normal path of pregnancy.

This complicated issue becomes even more so when you try and bring in political views and feminism.  I am not even going to attempt to tackle that paradox here but if you are interested check out The Paradox of Disability in Abortion Debates who explain more coherently than me how “disability rights and reproductive rights can conflict and intertwine, particularly on the issue of later abortion.”  Jenny Morris and Tom Shakespeare both write articulately on the subject as well.

The over simplification of the debate and the nature of the situation has led to a lot of misunderstanding and conflict, in particular in my bubble world between feminism and disabled people who would often agree on many other issues.  This has the potential to become divisive and that often wipes out the opportunity for nuanced discussion and sensitive conversations.  And these interactions should focus on society, not individuals.  Disabled people, or fetuses, are not the problem here.  The society in which we live is.  If parents knew that their child would grow up in a welcoming, supportive, accepting and accessible world then their reaction to screening results or their interest in knowing at all could look very different.

I’m going to wrap up this intensely difficult issue with a couple of quotes for you to think about:

“Very few forms of impairment involve so much suffering that non-existence would be preferable… Prenatal diagnosis can be justified in terms of the effect on parents and other siblings, but cannot be justified in terms of the benefits to the lief which is prevented from coming into existence as a result, except in the most severe cases of impairment”

Tom Shakespeare

“If the responsibility is placed on the individual woman to exercise the choice whether or not to give birth to a disabled child then the responsibility for choosing to bring up such a child also rests on her”

Jenny Morris (discussing the arguments, not sharing her view)

If you want to find out more about Tom’s views and the future of prenatal screening and testing then his lecture at Harvard Law School is worth a watch.

The capacity to consent

Whilst this post is going to focus on disability and consent, it is worth taking a few minutes to look at consent more widely. You cannot consent if:

  • you are asleep or unconscious
  • you are intoxicated
  • you are being threatened

If you consent once, that does not mean that person has lifelong privaledges.  Consent is a one time thing and you can change your mind, even part way through.

The tool which is used to assess whether someone has the capacity to consent in the UK is the Mental Capacity Act.  It starts with the idea that you assume everyone has capacity to consent.  You then only question this if you have “reasonable belief” that their capacity may be impaired.  Simply having a particular condition is not enough to deem you unable to consent.  This applies to a lot of things in life such as medical procedures but here I’m looking specifically at sexual activity.  We will see that just because someone can consent to something in one part of their life, doesn’t mean they can in another.

I read a fantastic paper that discussed the idea that capacity to consent is not a fixed thing. As people’s knowledge and experience grows so does their capacity to consent. Anyone, disability or not, who has had no sex ed and knows nothing about sex is going to struggle to truly consent to sex or sexual activity. As they develop knowledge, they develop the ability to consent. So at one stage in someone’s life they may not be able to consent to any sexual activity, with a bit of sex ed and support, they may be able to clearly consent to dating one particular person but not anything beyond kissing, and then later maybe consent to kissing another person or doing more than kissing.

When it comes to assessing capacity for consenting to sexual activity, this will involve a number of things.  Their health records may need to be reviewed, the person’s carers and other professionals will need to be engaged but most importantly, the person in question needs to be directly involved.  All of this will be looking at the person to judge their level of knowledge and understanding of the issue.  This is an individualised process and as we saw above, should start from the point of assuming the person is able to consent and not making assumptions based purely on their diagnosis or condition.

There are a number of tools and assessment processes already established and available to professionals who are undergoing work on sexual competency and consent.  These look at knowledge, the ability to reflect and evaluate situations, and understanding that one has a choice to participate and so does the prospective other person.

When I’m talking about knowledge, I mean things like understanding consenquences of sex, the ability to identify abusive situations, being able to be assertive and communicate* no as well as STIs, pregnancy, contraception and so on.  Essentially, everyone should have sex and relationship education.  Remember, we start by assuming someone can consent and thus, we approach sex ed with the idea that everyone potentially may have sex.

This goes wider than capacity to consent due to disability.  Can a young person consent to sex if they have not had thorough sex education?  A topic for another day I think…

Assessing a person‟s capacity to consent to sexual relationships is complex. What also comes to mind is whether we are in danger of applying criteria and intervening in the lives of young people with learning disabilities in ways which we do not do for other young people.

Colin Morrison

Obviously a lot of this discussion and the assessment process will be down to how a person’s disability affects them. Martin Lyden says that for people with severe learning or intellectual disabilities or other cognitive impairment, the assessment should establish whether the individual has: “awareness of person, time, place, and event; ability to accurately report events and to differentiate truth from fantasy or lies; ability to describe the process for deciding to engage in sexual activity; ability to discriminate when self and another are mutually agreeing to a sexual activity; and ability to perceive the verbal and non verbal signs of another’s feeling.”

Again, Lyden stresses the importance of situational based capacity to consent.  The ability to consent to sexual activity in one relationship does not necessarily mean that the person has a more global capacity to consent.  Equally the reverse is true.  We cannot make the assumption that because a person doesn’t have capacity to consent in every single situation that they can’t have it in any.

One of the reasons for our history of overprotection when it comes to disability and sex is a fear of risk.  Risk is seen as the end of the world when it comes to disabled people but almost everyone engages in risky behaviour at some point in their life.  We do it as children to get to know our world and ourselves and many adults do it on a friday night when they drink too much, smoke too much, maybe take drugs and go home with a stranger.  The assessment is on the person’s ability to consent, not what they do with that.

An individual may have sexual consent capacity even if he/she engages in unwise, illegal, or socially proscribed sexual behavior

-Martin Lyden

The key to all of this is assessment.  Unfortunately, this was one issue raised in a report by Barnados regarding learning disability and child sexual exploitation (CSE).  Whilst the report focused on CSE, one part of this is understanding whether a victim (over the legal age of consent) had capacity to consent.  A number of CSE professionals in the UK recognised that this was in need of urgent consideration.  There were concerns about how agencies responded to people with learning disabilities once they reached 18, including inadequate protection or not being identified as vulnerable.  Concern about ability to assess capacity to consent was another key issue, particularly where workers had little experience in CSE and/or learning disabilities.  Lack of resources was predictably another concern.

Lyden suggests that a committee of people should be involved in assessing capacity to consent to avoid bias and to avoid blame if the person does get pregnant, and STI etc.  The problem is that this all takes time, money and the understanding of the importance of sexuality to our identities.  But attitudes are changing and I remain hopeful.

The balance between providing someone with their rights and freedoms whilst still ensuring their safety is a difficult one and an individual one. However I do believe that the process of assessing capacity to consent highlights wider issues around how we teach all young people about sex and relationships as well as helping build people’s knowledge so that they have the potential to have a fun and pleasurable sex life.

Note: All of these considerations will apply to individuals with conditions like dementia which is of increasing importance in our ageing population.  It also highlights a gap in terms of deteriorating capacity to consent.  Professionals need to be able to recognise that it may be necessary to carry out an assessment to establish whether sex is appropriate between two married people, one of which has dementia.  It will be interesting to watch that space.


*Unfortunately I have seen and heard of too many cases where it was assumed that because a person was non-verbal, they were automatically unable to consent…

Sexuality and learning/intellectual disabilities 

The heavy stuff:

Firstly, I am going to use the phrase learning disabilities as this the English convention right now.  I understand that different countries use different terms and that some people may take offence at the phrase.  Language differs all over the world and changes over time but that is a discussion for another day.  The amazing crippledscholar talks about it over on her blog in several posts.

By learning disability, I am using the Mencap definition:

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

The other disclaimer here is that I am not someone with a learning disability and I have no immediate experience of sex and learning disabilities.  However, I am using reputable sources to compile this and I wanted to include it in my series about sexuality and disability because I think it’s an important part of the discussion.

If you have more experience in this area and would like to write a post, please let me know, I would love that.


Now let’s get down to business…

Relationships and sex can be great.  Everyone should have the option to be part of a relationship or to have sex, as long as they have the capacity to consent.  The second part of that sentence is crucial and I’m going to do an entire post around it at some point so for now, assume I’m referring to people who can consent.

Many people with a learning disability say that relationships are important to them – yet only 3% of people with a learning disability live as a couple, compared to 70% of the general adult population. – Mencap

So what’s going on?  Obviously there’s a mix of factors.  As we’ve seen before, there are people out there who say they wouldn’t have sex with someone with a disability so that will be one part of the issue here.  Other limiting factors include difficulty meeting people and social isolation, again this is common across the wide spectrum of disabilities.  Historically, living in institutions limited disabled people’s ability to engage in relationships.  The same goes for a lot of supported housing where there are strict routines and rules about people staying over and a lack of privacy.

Risk management

However, when it comes to learning disabilities in particular, there is a tendency for the people around the disabled person to risk manage.  This comes up in mental health services and in relation to other disabilities as well but seems more prevelant in the are of learning disabilities.  This idea that a person should not be allowed to take risks because of their illness.  The idea that people should life a risk free life simply because of their disability.  Think about it, we all take risks every day.  And some choices made by adults are riskier than others but we don’t stop them from making them.

We are less concerned by intimacy and love in learning disabled people’s lives than we are about (containing) sex #sexualities #cedr16

– A tweet from the Centre for Disability Research’s 2016 conference

I appreciate that caution may be appropriate depending on the situation but there is a difference between risk management and just flat out restriction.  And these attitudes then mean that sex education isn’t needed because “these people” won’t be having sex which in turn limits the persons ability to make safe choices.

When it comes to sex and disability, risk is privileged over pleasure.

This need to protect people from themselves is tied so much into the idea that anyone with a disability is child like.  I think this belief is probably more ingrained when it comes to learning disabilities.  Seeing someone as childlike means you don’t even think about them as a sexual being let alone think about how you can help a person safely explore their sexuality.

A report from Barnados around child sexual exploitation and learning disabilities says:

Professionals spoke at length about how young people with learning disabilities
can be overprotected and not given opportunities to learn, develop and take
risks in the same way as their non-disabled peers. Examples of this included
how young people’s experiences of the world can be confined to a door-to-door
taxi or bus service to and from a special school. In relation to the increased
potential for vulnerability to sexual exploitation, one example that interviewees
gave was how young people with learning disabilities may feel that they need to
keep relationships secret:

‘They’ve often not been allowed to have experiences that other young people
often have, so they may have to keep secrets because they do enjoy risk-
taking behaviour or flirting, for example.’

I think another key point in the discussion around sex and learning disabilities is that in most cases parents are far more involved in their child’s life that they would be for a child of the same age without a disability.  This can make it difficult to bring up sex at review meetings and other spaces where the conversation about relationships and sex could be had.

Hypersexual

As I mentioned in a previous post, there is a prevelant idea that people with learning disabilities are oversexual.  This has led to people being sterilised, “for their own good”.  Somehow this idea of a highly sexualised person with learning disabilities is used to prevent the person from engaging in sex and relationships completely.  It is somehow seen, by some people, that because of their learning disability, the person is inevitably going to be being taken advantage of and abused.  And whilst abuse is a real issue, this erases the idea that a person with a learning disability can be in a healthy, happy, consensual relationship.

Anyone with inadequate or non existent sex education is vulnerable to abuse and I will be writing a post about disability and sexual abuse.  If we don’t talk openly about sex, it perpetuates the idea that it’s taboo thus meaning that if something does happen that isn’t ok, people don’t know what to do, how to explain it or who to talk to.  Good sex education should cover consent, communication, safe sex and the physical and emotional aspects of sex.  This is the case for everyone even if you don’t think they’re going to have sex.  Empower people with information!

And if we don’t talk about sex and don’t ensure people know about consent and boundaries and what’s appropriate etc, then it can make it very hard for someone to know or understand that they’ve been sexually assaulted. In the Barnados report mentioned above, one young girl with a learning disability explains that she didn’t know it wasn’t ok for an adult to have sex with a child so she didn’t know she could say no.

Myths around oversexual people with learning disabilities can lead to further issues.  I have come across cases where someone with a learning disability has been blackmailed and controlled with the threat that everyone will be told they are a paedophile.  The fact this is used and has been successfully used as a blackmail technique shows how ready some people are to believe the hypersexualised trope.  On the other hand, if a person with a learning disability discloses being abused, they are often not believed because of this idea that they are non sexual.

The consequence of the view of people with learning disabilities as forever
children, assumed to be asexual, has been an overemphasis on protection and a denial and repression of sexuality or sexual behaviour. The view of the sexuality of people with learning disabilities as dangerous, informed by eugenics, involved control through institutionalisation, segregation and sterilisation. These stereotypes have provided what McCarthy calls contradictory but powerful “distorted frameworks” through which the sexuality of people with learning disabilities can be viewed.

Pregnancy and parenting

There seems to be a huge fear about people with learning disabilities getting pregnant which will inevitably feed into how people feel about the issue of sex.  This is despite evidence that shows a persons IQ is not an indicator of how good a parent they will be.  It is because of this fear that a number of women with learning disabilities find themselves on contraception, whether that is forced, coerced or heavily suggested.  There has been research done which shows that in a lot of cases the young woman isn’t told why she is taking this pill or being given this injection etc.  There are also a large number of cases where contraception is given to prevent periods and the link to pregnancy is not discussed.  This takes away bodily autonomy and can reduce care givers perception of the need to discuss safe sex despite not reducing the risk of rape and STIs.

LGBTQ

Some people with learning disabilities will identify as LGBTQ or be questioning their sexual orientation.  This can be difficult for anyone and support and information around sex should be inclusive of everyone.  It can be hard enough to be a sexual person when they world sees you as asexual, let alone not be heterosexual on top of that.  There are a number of resources out there including Secret Loves, Hidden Lives.

Support

If you are a person with a learning disability or you’re the parent of someone with a learning disability then there is support out there to help you navigate sexuality.

From what I understand a lot of young people with learning disabilities miss out completely on sex education or it is taught in a way which is not appropriate.  Because of this, services have been set up to help fill that gap although given the current political situation, I think they are few and far between.  But where they exist, they can be very powerful tools.

The following quote comes from someone working on a project specifically around sex and learning disabilities in London:

Through the Westminster project we talk about safeguarding, consent, what is appropriate in private and public spaces, and what the differences are between good and bad touch.

Much of it comes back to letting people with a learning disability know that having a relationship is ok and that it can be wonderful and make you happy. And we talk about how it is ok to be attracted to people of the same sex and that not all relationships are between a man and a woman and end in marriage and children.

While we must accept that for people with a learning disability it may always be that little bit harder to embark on a first relationship, there are ways we can make it easier.

– Miguel Tudela de la Fuente

There are specific resources out their to help people with learning disabilities and those around them to navigate the world of sex and sexuality.  I’ve listed a couple and would love to know if you’ve come across any that have been helpful:

Note: I haven’t discussed contraception and people with learning disabilities here.  I want to but it was getting long and I recently got attacked online for being a forced sterilisation apologist (which I’m not) and I’m feeling a bit raw still.