Stem Cells 101

This post is an attempt to explain what stem cells are, and the differences between the different types. I am not going to touch on the ethics of stem cell research in this post, but leave that for a later discussion. I do think it is important that people understand what a stem cell is before they are able to make a judgment call on the ethics surrounding the subject. That may sound obvious; but experience has shown me that again, and again, people (including very powerful people) will make a really serious decision, without fully understanding the issue behind stem cells.

I am also going to try to keep this short and therefore I may be accused of over-simplifying. I apologise in advance for that, and should be able to give more information if anyone requires it. I am not going to talk about the research at this stage either. It is just looking at the stem cell themselves, what they do, and where they come from.

Almost all living organisms have stem cells. The name comes from the fact (like a plant) these are the stem, that have the capability to produce different types of cells & therefore tissue. They are of course the cells which allow animals to grow (both in the womb, and later in life). They are also the cells which allow our bodies to repair damage. So if you want to see them at work, then you can cut yourself. Eventually the cut will heal over, and new tissue will be grown to heal the cut. Clever things…we would be in trouble without them.

Now there are different types of stems cells, and they are identified by the number of different types of tissue that they are able to produce.

• Totipotent - can produce any cell within the body
• Pluripotent - can produce almost any cell of the 3 germ layers.
• Multipotent - can produce any cell of a particular family of cells
• Unipotent - is only able to produce one type of cell

The potentially most useful cells are the ones that can produce the most type of cells - the first 2 (actually the focus is mostly on pluripotent) groups. And indeed it is these cells (and how they are harvested) that cause almost all the controversy.

In humans, pluripotent stem cells are taken from blastocysts, which are 3-5 day old embryos. The embryos are provided by fertility clinics. When females are receiving certain fertility treatments then they are given drugs to cause them to super-ovulate (or to produce many eggs). These are removed from the uterus and fertilised with the sperm. In other words, these embryos have never been inside a human body and would never go on to produce a foetus. If they were not to be used for stem cell research then they would be discarded, thrown out with any other organic waste.

A really exciting recent development from 2 separate pieces of research from last year, is the possibility to use adult multipotent skin stem cells, and alter them so that they could become pluripotent. Should this technique be fully successful, then it may remove almost all of the objections that people may have against stem cell research.

In the next post I would like to discuss the different research areas, and the lists of diseases / impairments / medical advantages that may be possible through this research. I think only when there is a full understanding of the facts, and issues that we can then go on to discuss the ethics.

Sad reflection on the status of people with disabilities in China

Recently I read an article in the Times which pulled apart a document produced by the Chinese to "advise" people who to treat people with disabilities in preparation for the upcoming Paralympics. It really made some sad reading, especially given that there are approx 83 million people with disabilities living in China (which is equal to the entire population of Germany).

"The guide for Chinese volunteers at the Games this summer explains that disabled people are a “special group” with “unique personalities and ways of thinking”.

The section of the manual entitled “Skills for helping the disabled” goes on to say: “Some physically disabled are isolated, unsocial, and introspective. They can be stubborn and controlling . . . defensive and have a strong sense of inferiority."

So then I began to think about how people with disabilities are treated here, in South Africa. I am afraid to say that in many cases we are just as bad, and in some areas we are worse. Recently, I was asked to give a talk to a group of business people in Jo'burg on the integration of Disability. What shocked me was what the speaker before me was saying. He runs some rehabilitation centres for people with disabilities and he was speaking from his experience of running them. His main thrust was that newly disabled people have usually "lost their connection with god" and the first step to rehabilitation HAS to be making that connection. Because I was being paid to speak, it would have been inappropriate for me to shout him down (although I did correct that when it came to my own turn!!!). I really feel so sorry for all the people in his "care". Now, I will admit that I have met many newly disabled people, whose faith has helped them come to terms with their disability. I would not deny that, and I have seen that it does work for some people. However, I have also seen the complete reverse, where a person's faith or religion has really had a huge negative effect on a person's recovery. Some people (including the sad, deluded, Oprah -inspired, "the secret-loving", mindless eejuts) actually believe that a disability is a punishment from a god for some sin committed. I have been informed that I am in a wheelchair for that reason on more than one occasion. How would a person begin to come to terms with that? It is awful, and the proponents of this sick way of thinking should be ashamed with the hurt and negative impact that they may cause. Fortunately, for me, I do not believe that there is any god or supernatural being, but I can only imagine the really deep psychological issues that a believer may feel if they think that way or are told that.

In some sections of society in South Africa, a person with a disability is viewed as an embarrassment, as they really think that it is some form of punishment on either the individual or even the family. For this reason the person is often hidden away from society. I have found people who have not been out of their shack (or even their family's up market house...it is not just certain sections of society) for years. They carry a massive amount of guilt for what they think they are putting their family through.

Of course, there is sometime guilt involved with newly disabled people, depending on individual circumstances. I felt very guilty as my disability was initiated through sport (something I did not have to do), and also that I did not appear to have the same earning potential as before (this coupled with having to spend a lot of my savings, which had been put aside for children's education and the like. I also felt like less of a man. I would suggest that they are all pretty normal issues that many people have to come to terms with. But add a sick religious (or perhaps supernatural belief in the case of 'the secret" believers) dimension on top of that, and that must make that guilt feel almost unbearable for some people.

86% of people with disabilities gain their disability through their lives (only 14% were born with the disability). 10 - 20% of any population are disabled. People with disabilities are just people who live with different impairments. We are not (necessarily!) sinners, or saints! Get rid of the labels!! We are all in this together. Some people with disabilities may require your assistance at times - but either wait to be asked, or please ask before providing it. If you go to shake someone's hand and you are given a stump to shake, then bloody well shake that. If the person has problems speaking, then please don't try to finish the words or sentences for them. Don't pet their guide dogs when the dogs are in harness. Don't stare. If a child asks you why that person is in a wheelchair / blind / walks funny / looks funny / whatever, then give the child a sensible answer (dependent on their age) after all there are the disabled and those people who are temporarily able, and tomorrow it may be you or the child who is the one being asked about. If you happen to believe that your version of your god is the sort that disables people as a punishment, then please keep that to yourself, and I hope that you would find a way to live with that belief if you ever become disabled yourself...

Approach to Design Issues

I particularly like this approach to design, I think I picked it up from CABE - but I must check that. It sort of sums up how we should approach design issues very neatly.

Although the academic and broadsheet worlds still tend to refer to ‘the elderly’ and ‘the disabled’, as if they form distinct groups outside the mainstream of society, there is a growing trend to recognise age and disability as something we will all experience, and therefore part of a normal lifecourse. Disabled people have become increasingly assertive about their rights to access buildings and services, while for older people the emphasis is now on independence. Both groups aspire to active participation within the mainstream of society, reject the dependency and institutionalisation that were the norm for much of the last century, and are beginning to assert themselves as consumers
who control significant amounts of disposable income. Such new expectations offer a rationale for design that is ‘inclusive’ rather that exclusive, and more closely aligned to contemporary social expectations.

I therefore get quite annoyed with the prevalence worldwide, and possibly more so here in South Africa, of the Disability Sector trouncing out the "nothing for us, without us" quote that has been hijacked from the civil rights movement. Of course as in a previous post, the design has to be inclusionary and the process of design has to be participative. But throw away lines, like the above, only perpetuates the "us & them" mentality. There is no "us & them" - we are them, and they are us (or could be one day!). We are designing for society, for everyone. Everyone is involved in this. Many times, in Internet debates I have pushed certain aspects (some may even call me opinionated!), and these have been ignored or devalued by other people in the debate...until they find out that I am a wheelchair user. It does not make any difference! My view should carry the same weight! Sure my disability opened my eyes to these issues, but that was only because I was blind beforehand. Most of the people on my Masters course appear not to be disabled, but does that lessen their input or views? Of course not! I really feel that until the Disability Sector can move away from this viewpoint we will continue to be hamstrung here. As an interesting point; I have noticed that people seem to pay more attention during a 'combined' workshop when my business partner, Jeremy, (who happens to be blind) talks about wheelchair access, and then I (who happens to be a wheelchair user) talks about deaf issues.
Why shouldn't we? We have both done a lot of work in the Disability field, and have something to offer. Just because our own impairment does not match the subject heading has no effect on the validity of our comments.

Political Correctness

I guess, as I am intending to write about a range of disabilities, that I ought to explain my view on nomenclature and political correctness.

My views on this (and many other subjects!) happen to coincide with the comic genius, Billy Connelly. He ways that political correctness should be stamped out at any possibility. I totally agree, as I honestly feel that terminology, and people's uncertainty surrounding the issues causes so many problems. Should it be person with a disability (as in South Africa), as proponents of this term say that it puts the person first? Or should it be (as in Europe) a disabled person? This follows on from the social model of disability, where I am disabled by the environment that I am in. I would lean to the latter (which does not always make me popular in some circles!). But at the end of the day, does it really matter? We are all people reacting individually, but normally, to abnormal situations. Get a group of wheelchair users (riders?) together, and before very long we start to refer to ourselves as "crips"!! People need to stop being so sensitive and precious. So you will notice me using all sorts of un "PC" terms, and I make no apology for that. If you are offended, then you should not be as no offence is meant. I suggest that people should listen to the excellent BBC Ouch Podcasts, to experience some good un PC action.

Jeremy, my business partner is visually impaired, so I refer to him as Bacon - Bacon Rind = Blind. I am a paraplegic, so I am Raspberry - Raspberry Ripple = Cripple. I will throw some more terms up soon...