Archive for August, 2013

#FemSchool13 – A Quick Summary Of My Weekend

I spent this weekend at the annual UK Feminista Summer School. It’s a weekend where feminists/women’s rights activists come together to learn from each other, organise and get inspired. All in all I had a wonderful time. Contrary to the picture the media presented the weekend was not all about ending Page 3 and Lads Mags to the exclusion of all else. Rather it was a eclectic mix of intersectional workshops and talks covering subjects such as class, race, disability, sexuality, arts, campaigning, lobbying, the criminal justice system, economics and much more.

The main hall starting to fill up for the welcoming meeting.

I arrived on the Saturday morning to take part in the welcoming panel with Lara Bates from the Everyday Sexism project and Constance Nzeneu, Migrant & Refugee Woman of the Year winner. The panel was great fun, it was a bit odd to be sitting in front of all those people talking about my activism and why I campaign for change, but if it helped one other person realise that they could make a small difference I think it was worth it.

Myself & Laura Bates getting ready to sit on the panel.

My personal goal for the weekend was to try to get as many people as possible thinking about disability as both a part of feminism and a important civil rights movement on it’s own. I really do believe that the struggle for civil rights needs to be intersectional. We are all stronger if we work together while, of course, still respecting the need for our own spaces. After the welcoming panel I went to a Mental Health & Intersectionality workshop where we were urged to look at how various types of oppression can exacerbate and cause mental health problems.

I followed that up by going to a workshop I was personally interested in – Women in Prison – which looked at how the current system is not set up to deal effectively with women in the prison system or after release. We learned that the vast majority of female prisoners have mental health problems, many of them personality disorders, which stem from frequently traumatic/turbulent childhoods. We learned a bit about how the system can breed dependency as well as how there is little scope for meaningful rehabilitation without structured support outside of prisons. It was a fascinating session, one I’m really glad I went to.

Instead of going to a third workshop I offered to run a open space session* on disability and language entitled “That’s so lame!”. I chose that name because I wanted to take a word that is used everyday by people in all walks of life that has disableist connections and use it to challenge the audience. Over the last couple of years I’ve discovered that many people who use the word lame to mean rubbish often don’t realise that the word refers to someone who is physically disabled and has a impairment that effects the ability to walk or effects the use of a limb. So we discussed the institutional disableism that creates a language where words describing impairments become interchangeable with words like rubbish, pathetic, useless, defective, dull & stupid in the collective consciousness. We also talked about differences between US & UK ways of talking about disablism and more to boot. It was really enjoyable. I finished off the day by going to the disabled women’s safe space meeting.

On Sunday I was running (with the help of my friend, Jackie) a workshop on Disability, Feminism and Activism. Given how awesome the other workshops happening at the same time sounded I was really happy that we still got a decent sized group. We covered a lot in the hour we had; the basics of disability, the pro’s of intersectionality and a run down of the last 40 years worth of campaigning for disabled peoples rights. We did some group activities as well thinking about feminist areas of interest that strongly intersect with those of disabled people (like reproductive rights, abuse, education, body image, austerity etc..) and thinking about campaigns both movements could join together to in. The attendees were fantastic and I had a super morning chatting with them.

I had to leave after that point because I was a) almost out of spoons and b) had a family engagement that afternoon. It was a wonderful event and one that I’d recommend to anyone interested in meeting other feminists and/or learning some new skills and theory. I’m really sad that I didn’t get the chance to go to any of the workshops exploring other intersections like sexuality or race but hopefully I’ll get the chance next year.

*At open space sessions anyone can suggest a topic/plan they’d like to talk about and meet others who are interested in doing the same. 

Ableism Or Disablism?

Nearly all the big US based blogs on line talk about ableism being something experienced by persons with disabilities because we live in a society where being able-bodied gives you a level of privilege/being a person with a disability means you experience oppression specific to that.

Many of us in the UK who fight for disabled peoples rights don’t use that language. We talk about disablism the oppression faced by disabled people, because society is set up to primarily cater to the needs of non-disabled people.
Which set of language is the best to use? Is there even a difference? Are those in the UK backwards?
I have opinions on this so I’m going to share them (it’s what blogs are for after all). You can make up your own mind. All I would ask is that you have a think about what the words mean, the sentiment attached to them and if you think they are contributing to make the world a more equal place for everyone.
There are two big models of disability which state the following;
  • The Medical Model – That people are disabled by impairments* e.g. Jean’s amputation is why she can’t get into all the shops she wants to or, David’s Downs Syndrome is why he struggles to find work. In feminist terms it’s like saying women don’t have equality because their biology is the problem.
  • The Social Model – That people with impairments* are disabled by an inaccessible society e.g. Jean can’t get into all the shops she wants to because they were designed without access and/or staff are not trained to provide reasonable assistance; or David struggles to find a job because our society allows institutional stigma attached to his impairment to continue to exist. In feminist terms it’s like saying women don’t have full equality because we live in a patriarchal society.
We have all fought long and hard to move away from the medical model and move towards the social model and to move away from the language of the medical model that places the blame for inequality on the person with an impairment. Those who follow the medical model also have a tendency to minimise, dismiss or ignore impairments without a currently understood physical origin (including many learning disabilities, ME/CFS/Fibromyalgia, mental health conditions and other such things).
With this in mind I’m going to talk about why I personally think the words “able-bodied”, “ableism” and “people with disabilities” are problematic.
Able-bodied
I find language that describes people without impairments to be able-bodied, exclusionary and there for divisive. There is a pernicious idea held by many in society that most disabled people use wheelchairs (when less than 7% do) and that most impairments are physical impairments involving paralysis or amputation. It comes from things like media bias when selecting representatives, the international symbol for ‘disability’ being a wheelchair and things like the paralympics where there are a disproportionate amount of contestants with a limited spectrum of impairments. I’m sure you can see why this is less than ideal.
The phrase able-bodied suggests that all disabled people by contrast don’t have able-bodies, which is;
a) impairment focused, something that feels very close to the ways of thinking enshrined in the medical model,
b) plays into the problematic stereotype mentioned above and
c) clearly not all disabled people have physical impairments which make their bodies non-able. A person on the autistic-spectrum or with schizophrenia is completely able-bodied yet I think we can agree they still have to deal with stigma & oppression/exclusion from society. A person who uses glasses to correct a physical visual impairment may not ever think of themselves as being disabled or non-able.
Using the social model we have a definition of disability which moves away from impairments and looks at societal oppression/exclusion/barriers faced by those who happen to have impairments. Those who experience that oppression are disabled by it, they are disabled people. Conversely those who do not are not disabled by it. They are non-disabled.
Ableism
Ableism stems from the same ideas that able-bodied does. That disability equates to not having a body that works as a “normal, able” body should. I feel that it too is exclusionary and harks back to the outdated thinking of the medical model. It also helps enforce the idea that disabled people are less able than non-disabled people. I would argue that there is a massive spectrum of ability within the disabled community, the same way there is a massive spectrum of ability within the non-disabled community. For those reasons I prefer the term disableism to describe the disabling oppression we face.
People with Disabilities
You may have heard about person first language. People with disabilities is an example of that. Person first language was coined as a better way about talking about people with impairments. It’s pretty simple, you talk about the person first instead of the impairment. So instead of saying “Go ask the epileptic” people now try to say “Go ask Steve”. If the impairment has to be mentioned then it gets mentioned after the person has been, for example “This is Steve, he’s here today because has epilepsy and it’s flaring up at the moment”. It’s a great way of using language to avoid de-humanising people with impairments.
The thing is that it’s a great way of talking about impairments. As I hope I have explained disability is subtly different to impairments, the two words do not mean the same thing. Both words have different meanings. Impairments are something that a person has a level of ownership over, they are frequently part of who they are. Disability on the other hand is not, it’s something done by an inaccessible society to a person. If we were to imply that it was something owned by the person then we’d be taking a big step backwards to wards the medical model. This is why I (and a lot of others) prefer the term “disabled person”. It is a stark reminder that the individual is disabled by society. I have heard the arguments that “people with disabilities” is trying to do just that, but I personally don’t think that using the language of talking about impairments to talk about disability instead is anything but confusing and slightly counter-productive.
I know that there are plenty of people out there who would argue that the phrase ableism is inclusive of everyone who is disabled, it’s not the word and it’s construction people should pay attention to it’s the meaning/intent. I personally don’t agree. Words have meaning, words inspire imagery, words strengthen or weaken conceptions, words are frequently read and heard without intent. I also understand that there are plenty of vaild criticisms of the social model and of the very words disability and impairment and their origins and connotations. I don’t want to turn this blog post into a thesis though so I’m going to leave them for another day.
I don’t expect you all to agree with me, but I hope this post has helped people explore some of the issues around the language we use.
* an impairment is any medical condition (be it sickness or not), mental health condition, learning disability, genetic or cognitive condition etc..

What Is The Mental Capacity Act?

Last week I attended an interesting talk on the Mental Capacity Act (for beginners I should add) and I thought I’d share what I learned with you.

History

In 1994 a man with profound learning disabilities and complex care needs was released from residential care to live with a family in Surrey. He developed a routine and went about his life without serious incident until 1997. The family said of the first 3 years “It’s fair to say that it was a challenge – but it was rewarding to see how much [he] benefited from living in a family setting. At first he was very institutionalised, but he gradually became more confident and progressed beyond all expectations.”
He attended a day centre once a week and did so without issue until one day he got on the bus to find he had a different driver who took a different route to the day centre. The man arrived feeling very agitated and staff had difficulty calming him down. The next thing the family he lived with knew was that he had been “admitted informally” into hospital without their consultation. They were also informed that they were not allowed any contact with him. This was all done after one quick consultation with a doctor who did not know the man or his family, because of how the system worked then all they had to do was claim it was in the man’s “best interests” and they could remove his liberty with no option for appeal.
The family began a lengthy legal battle which lead to the man coming home and the discovery of the abuses he had experienced whilst detained. The Department of Health fought the legal action and eventually it ended up at the European Court of Human Rights. In 2004 the ECHR ruled in the man’s favour and as a result the UK government released the Deprivation of Liberty Safeguards, part of the Mental Capacity Act 2005, which came into force in 2009. This case is known as the Bournewood Case if you wish to do more reading.

Purpose

The Mental Capacity Act 2005 (MCA) should provide a legal framework for dealing with adults over the age of 16 (18 with regards to deprivation of liberty cases) who are believed to lack the capacity to make decisions for themselves. This does not just apply to people with profound learning disabilities or cognitive disabilities but also applies to people who have lost conciousness*, are in shock or any other state that means they may (even temporarily) lack the capacity to make crucial decisions.

Principles

The MCA is decision specific. This means that it is only applied to somebodies ability to make one particular type of “decision” at a time. This should help to stop someone who lacks the capacity to make complex financial decisions also automatically loosing the ability to choose what to eat, whether to undergo a particular medical procedure or which activities they can safely engage in. It bears in mind that not being able to dress is not the same as not being able to bank. The only people thought to lack all capacity are those who are unconscious. On to of that there are five key principles which provide a framework for applying the MCA:

  1. Presume Capacity – when assessing people should always be presumed to have full capacity in all areas until it its proven otherwise.
  2. Allow for Unwise Decisions – it’s important to remember that people with capacity can still make unwise decisions. If someone with diabetes decides they want to eat a bag of sugary sweets it’s not necessarily a sign of a lack of mental capacity. Part of having capacity is having the ability to make both wise and unwise choices.
  3. Maximise Communication – not being able to communicate easily is not the same as lacking capacity. If someone can make choices then every attempt to help them communicate meaningfully should be made so they can maintain independence. If someone is in an acute state of shock and a choice can wait until they have regained their ability to communicate then it should be left until they can make it. If someone can communicate via eye movement only then systems need to be put in place so they can do that rather than declaring them to lack capacity.
  4. Best Interests – If after looking at the above principles someone is still thought to be lacking capacity to make a specific decision then it must be ensured that any action taken is thoroughly in the persons best interests. Not the best interests of local government, a care firm or friends/family members but the best interests of the person deemed to lack capacity. This should help protect the individual from abuse.
  5. Least Restrictive Option – When deciding what action to put in place for someone deemed to lack capacity the least restrictive option should always be used. If someone is deemed to lack the capacity to make serious medical decisions they shouldn’t be institutionalised. All other options, such as the use an advocate should be exhausted first.

Assessment

The assessment is normally done in two stages:

  1. They look to see if there is an impairment in the functioning of the mind or brain. If there is no impairment then a person has capacity and the process stops there. If there is an impairment then they go onto the next stage.
  2. Assessors check to see if the individual, with regards to a specific decision, can; understand information, retain information, use information and communicate decisions. 
If the assessment/assessors is looking at a potential deprivation of liberty situation (when restraint/medication used to “restrain”/1 to 1’s/ 2 to 1’s etc… are being used over a long period of time) then 6 assessments should take place which are preformed by a GP and a Best Interest Assessor to ensure it’s in a persons best interests and the least restrictive option available. The longest deprivation of liberty orders are for 12 months.
Mental Health Act
I should say that the Mental Health Act (MHA) and the MCA are two different thing with some overlap. People sometimes assume the two things are the same, they are not. The MHA is designed to ensure people who need treatment for a severe mental health disorder receive it, even if it goes against their wishes (as long as it can be shown that not treating them would put themselves or others at risk). People with severe mental health disorders can still maintain full capacity, so if they need to be detained so that treatment can be provided the MHA would be used, not the MCA. If someone with capacity is “Sectioned” because of a mental health problem and is being deprived of liberty then that is nothing to do with the MCA. On the other hand, someone could have a mental health disorder that has had the effect of removing capacity to make certain decisions but is not severe enough to warrant a deprivation of liberty under the MHA. In that case the MCA could come into play.
I hope you found that as interesting as I did, and I’m sorry if there are any parts I’ve not explained very clearly. 
* I don’t know if you remember but in the USA there was a spate of stories about people who had undergone CPR suing those who tried to save them for assault (because CPR frequently results in broken ribs and bruising), the MCA now protects those in the UK from the same threat of legal action as long as the action is clearly in the persons without capacities best interests.
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