Wonderful Concert by Filia School at Cape Town Stadium

There has been a lot of nonsense, and unfounded allegations recently regarding some of the stadia built for the FIFA 2010 competition.  The concert today clearly demonstrated to everyone that Cape Town Stadium is fully accessible to all.

Filia School is a special needs educational unit based in Goodwood.  They had asked me if I knew of an accessible facility where they could hold their concert (see the post below).  The City of Cape Town, and SAIL Stade de France (the stadium operators) kindly offered the stadium to be used free of charge.  There were nearly 200 children with disabilities performing.  The audience comprised a wide range of people, from different schools and different places from around the Western Cape.  There were many people with disabilities in the audience, to enjoy the performance.

The concert could not have happened without some key individuals; Dave Hugo, from the City of Cape Town, Jean-Louis Romain & Wayne Dreyer, from SAIL Stade de France, Denise Robinson MP from Parliament, and of course the staff and learners at the school...who were amazing.

I was lucky enough to be able to see both the performers, and the audience, and there was a lot of emotion, from both sides.  Looking at the excitement of the children as they prepared to perform in the very places where the World's top footballers will soon be playing was priceless (and put all the recent nonsense into place!).  The audience were also moved, and there were several rather moist eyes at the very moving Nathional Anthem at the end of the concert.

Today was a very special day.  For me, as the access consultant to the stadium, it was the pinnacle of 4 years work; to see the accessible stadium being used by performers where individual disabilities made no difference to their performance or enjoyment.

Invitation to a Special Concert in a Special Place

Press Release


Cape Town Stadium is proud to host Filia School’s Laduma concert in celebration of the 2010 FIFA Soccer World Cup®.
Filia School is a special needs educational facility from Goodwood. This is the third, and final, annual concert that they have been staging in the build up to the 2010 FIFA Soccer World Cup®, due to start on 11th June.

The concert performed by the children at the school celebrates the cultural diversity of our world. It is fitting that this final event should be held in the newly completed, accessible, Cape Town Stadium. It will be the last event before the stadium will be handed over to FIFA for the event in June. We hope to join with the children in welcoming the overseas visitors to South Africa, and to celebrate the new, world class facility we have here in Cape Town.
We would like to invite you, your colleagues, and your children to this special event.

    Date: Wednesday, 12 May 2010


    Time: 10h00 – 12h00


    Venue: Cape Town Stadium

Please note this is a free event, although we will be asking for donations for future events for the school.

We are hoping that we shall be joined by the local & international media, local dignitaries, family & friends. Please join us for the very special event. Should you require any further information, please contact the school directly on 021 592 1361/2/3, fax 021 592 1369.
Filia School is a training centre for learners between the ages of 4 and 18 years who are physically and intellectually challenged. Learners attending the school have severe physically disabilities such as those caused by cerebral palsy or genetic abnormalities. In this environment every effort is made to provide the learners with quality education specially designed to meet their particular needs and technology has to be specially adapted to cater for their requirements.

Some comments sent to the school from the last concert:

• Filia You’ve done it again!!

• What a wonderful morning!!!

• You tugged at my heart strings.

• How talented your children are

• Thanks to such a dedicated staff.

• I take my hat off to you

• Thanks to your dedication your patience, your love.

• I salute you

• This calls for a repeat. Please!

• Others need to see this!

• It was such a joy to see your learners on stage yesterday.

• Keep doing the lovely uplifting work that you do.

• My compliments to you & your staff for having such an appropriate and spectacular event just before world cup soccer.

• The whole production touched my heart.

• My wife and I were privileged to attend your concert; it was great

• Just to inform you what a soul refreshing time we had.

Polished Apartheid

Discrimination with style.


Maybe I should wait a while to calm down before posting this. The following may get deleted, as my blood pressure drops.

I thought that every (volcanic) cloud has a silver lining… Well I was wrong. What I should have realised is that I always get the shitty end of the stick again.

A good friend is in the international tourism business. He had arranged for a whole trip (for a BMW promotion) to fly a group out from Germany, and show them around South Africa, prior to the World Cup. One of the "highlights" of the trip was to have been a trip on the famous Blue Train, from Cape Town to Pretoria. But the flight restrictions meant that they could not fly out… So this friend had to cancel what he could, but he could not cancel the train, as he had booked out the whole train. So he contacted all his friends, offering us a trip on the Blue Train at a really good price (normally the trip from Cape Town to Pretoria is over R10,000 per person).

So, as it is my birthday coming up, and my wife felt that we deserved a break after a really hectic few months, we joined the trip. Now, our friend obviously knows that I am a wheelchair user, and double checked with the Blue Train management that the train was accessible. We were informed that the whole train is fully accessible, and that there is a specific cabin for wheelchair users. So we booked…and paid several thousand Rand over. We also booked return flights, and then last night, took my car to the airport, so we would be able to get home again when we flew back on Sunday night. We were really excited about the trip; the Blue Train is famous all around the world, and having the whole train full of our friends promised to be a once in a lifetime experience…

So this early this morning, we were collected by the minibus we organised, and drove through to Cape Town Station. We were greeted in the Blue Train lounge with champagne and bucks fizz, and checked in. Our wheelchair accessible cabin was booked… So we caught up with all our friends, and excitedly discussed the trip ahead. Then we were called to the train…

I began to get a sinking feeling with the way that the staff were treating me. Each of them trying to push me, even though I each time told them that I prefer to roll myself…and have no handles on my wheelchair for that reason. So we get taken to the train, and the feeling sank a bit further when the doorway into the train was a typical narrow door.

    "Can you walk a few steps?" Hmmm…sink a bit more…

    "No, I am sorry, I cannot walk or even stand at all"

    "oh…." Sinking fast now.

They then 'find' the train's wheelchair, which is a bit narrower than my own wheelchair, and inform me that I will have to use that. OK…even though I am much more comfortable in my own wheelchair, and the wheelchair they offer is certainly not in keeping with the 5 star plushness of the rest of the train; it looks a really tatty old thing. The baggage trolleys look much smarter!

But even that narrow wheelchair cannot fit through the door... They all scratch their heads for a while…delaying the train. Friends begin to come out of their cabins to see what the problem is. Some of them offer well meaning, but useless advice… I am really sinking fast now… No ramp, no way in… And the departure time has now been passed. So…against my wife's advice, I bum shuffle onto the train, and lift myself into their narrow wheelchair. OK, at least I am on now…and hopefully the crowd will dissipate.

So I roll down the narrow corridor (there is no way my wheelchair would fit), thinking that it is pretty stupid to have the wheelchair accessible cabin so far from the dining car & bar… The smoking lounge is also at the opposite end of the train…never mind… So I decided to check the "accessible cabin".

Now remember that this costs over R10,000 per person, and I could have been a traveller from Europe for this experience. Surely the cabin will be fantastic, to make up for this… But that sinking feeling is still with me, and going down, as I graze my knuckles down the corridor… I get to the cabin, but I cannot manoeuvre the tiny wheelchair through the door… It is impossible…

Oh, no, this is getting worse!

So my 'butler' lifts the wheelchair across and into the cabin…but I still can't get in. I am stuck in the doorway, as the furniture inside (the specific wheelchair cabin) means that a wheelchair cannot get in. So I am lifted out of the room again. Still the train has not moved, and I warn the manager not to let it leave until we have this sorted… The furniture is then lifted out of the room…and I am lifted back in… But then I try to get into the one suite bathroom, and no way. The door from the "wheelchair accessible" cabin into its "wheelchair accessible" bathroom is too narrow to fit a wheelchair through.

At this stage there are tears rolling down my wife's face… I am feeling shit, for again being the reason for spoiling another nice weekend… This is not going to work… So I decide to get off… If I cannot go to the toilet, get into bed, and have to be assisted in and out of my room, I am not going to be good company for this weekend. My wife wants to get off with me, but, through her tears, I convince her to stay on, and to enjoy the weekend with our friends. The staff look on hopeless… The manager is getting increasingly irate calls asking why the train is delayed… They all look suitably embarrassed. I am keeping my increasing anger under control. Several friends come along, and try to remonstrate with the staff, but I point out it is not their fault, and I do not want to spoil all their weekends… So I reverse down the corridor, and bum shuffle off the train, back into my wheelchair… The crowd has reformed, and while keeping my anger under control, I squirm in their collective sympathetic looks and comments. They all mean well, but I just need to get out of here.
The train manager assures me that someone will come to collect me, and they will arrange for a taxi to take me to the airport to collect my car. I kiss my wife, and tell her to enjoy the trip…while she wishes me a happy birthday… Our other friends look on helpless…

The doors close, and the train pulls out of the station…

But no one comes, as expected… So I make my own way back to the lounge. There is only the receptionist there…everyone else has gone. She then phones to ask for a taxi to the airport, and I decide to leave before I say or do something that I may later regret. Having to pay (R200) for my own taxi did not help my mood… I think the taxi driver could sense there was something wrong…as I was not able to enter a conversation with him… Angry that we were all given false information… Angry that a world recognised icon of South African tourism is not accessible… Angry that I have left a bad taste of the weekend with my friends… Angry that I cannot enjoy this special adventure… Angry that it has upset my wife… Angry that I can't enjoy my birthday surprise… Angry that the management compounded their mistakes by not following through, and leaving me to pay for the taxi… Angry that the situation has embarrassed my friend who organised the trip…. Angry that I was put in the situation where all my friends could see my predicament, and angry that they are all feeling sorry for me now… Angry that I have hurt my shoulders & skinned my knuckles more getting into and out of, and around an inaccessible train… Angry that a 5 star luxurious facility has absolutely no idea of how to deal with people with disabilities… Angry that I have been discriminated against directly because of my disability… Angry that I am missing out on a once in a lifetime experience… Angry that something as well known as the Blue Train all around the world is blatantly breaking South African laws, and ignorant of the responsibilities it has under our constitution…. Angry not only that they are inaccessible, but that they claim to be accessible, which makes it worse...

Really angry…

I shall calm down slowly over the weekend at home alone… Next week I shall write them a long letter, explaining where they went wrong, and how they need my company's services to ensure that they comply with their responsibilities as a South African company. But not just yet. I am too angry. I have been excluded from joining my friends for a wonderful weekend, because of my disability. This is the same (in the eyes of the law) as kicking me off, because I have the wrong colour skin. Let no one tell you that we have got rid of Apartheid in South Africa. I got a dose of it today. I know how it feels to be excluded, discriminated against. Sod "Previously" disadvantaged individuals, how about trying to fix things for "Currently" disadvantaged individuals??

Just had a phone call from a tearful wife… She tells me that the friend who has organised the trip is feeling really awful, as are a number of our friends… There was talk apparently of them all getting off the train in support of me, but my wife pleaded with them not to do that, as it would only make me feel worse…

I need to go and kill something now...

SpeakZA

Last week, shocking revelations concerning the activities of the ANC Youth League spokesperson Nyiko Floyd Shivambu came to the fore. According to a letter published in various news outlets, a complaint was laid by 19 political journalists with the Secretary General of the ANC, against Shivambu. This complaint letter detailed attempts by Shivambu to leak a dossier to certain journalists, purporting to expose the money laundering practices of Dumisani Lubisi, a journalist at the City Press. The letter also detailed the intimidation that followed when these journalists refused to publish these revelations.




We condemn in the strongest possible terms the reprisals against journalists by Shivambu. His actions constitute a blatant attack on media freedom and a grave infringement on Constitutional rights. It is a disturbing step towards dictatorial rule in South Africa. We call on the ANC and the ANC Youth League to distance themselves from the actions of Shivambu. The media have, time and again, been a vital democratic

safeguard by exposing the actions of individuals who have abused their positions of power for personal and political gain.



The press have played a vital role in the liberation struggle, operating under difficult and often dangerous conditions to document some of the most crucial moments in the struggle against apartheid. It is therefore distressing to note that certain people within the ruling party are willing to maliciously target journalists by invading their privacy and threatening their colleagues in a bid to silence them in their legitimate work.



We also note the breathtaking hubris displayed by Shivambu and the ANC Youth League President Julius Malema in their response to the letter of complaint. Shivambu and Malema clearly have no respect for the media and the rights afforded to the media by the Constitution of South Africa. Such a response serves only to reinforce the position that the motive for leaking the so-called dossier was not a legitimate concern, but a insolent effort to intimidate and bully a journalist who had exposed embarrassing information about the Youth League President.

We urge the ANC as a whole to reaffirm its commitment to media freedom and other Constitutional rights we enjoy as a country.



Blog Roll



http://thoughtleader.co.za/siphohlongwane

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http://capetowngirl.co.za/

http://thoughtleader.co.za/sentletsediakanyo

http://thoughtleader.co.za/davidjsmith

http://letterdash.com/one-eye-only

http://boyuninterrupted.blogspot.com/

http://amandasevasti.com/

http://blog.empyrean.co.za/

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http://6000.co.za/

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http://pieftw.com/

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http://thoughtleader.co.za/azadessa

http://watkykjy.co.za/

http://fredhatman.co.za/

http://thelifeanddeathchronicles.blogspot.com/

http://blogs.timeslive.co.za/common-dialogue/

http://www.clivesimpkins.blogs.com/

http://mashadutoit.wordpress.com/

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http://sarocks.co.za/

http://blogs.timeslive.co.za/stompies/

http://helenmoffett.book.co.za/blog/

http://01universe.blogspot.com/

http://groundwork.worpress.com/

http://iwrotethisforyou.me/

http://fionasnyckers.book.co.za/

http://attentiontodetail.wordpress.com/

http://blogs.women24.com/editor

http://www.missmillib.blogspot.com/

http://snowgoose.co.za/

http://dreamfoundry.co.za/

http://www.vanoodle.blogspot.com/

http://www.exmi.co.za/

http://cat-dubai.blogspot.com/

http://alistairfairweather.com/

http://www.zanedickens.com/

http://www.nickhuntdavis.com/

http://guysa.blogspot.com/

http://book.co.za/

http://baldy.co.za/

http://skinnylaminx.com/

http://blogs.african-writing.com/zukiswa

http://www.mielie.wordpress.com/

http://blogs.timeslive.co.za/gatherer/

http://thoughtleader.co.za/sarahbritten

http://stii.co.za/

http://blogs.news24.com/FSB_AP

http://twistedkoeksuster.blogspot.com/

http://whensmokegetsinyoureyes.blogspot.com/

http://trinklebean.wordpress.com/

http://commentry.wordpress.com/

http://matthewbuckland.com/

http://blogs.news24.com/colour-me-fran

http://gormendizer.co.za/

Challenge to the Premier of Gauteng Province

OK, maybe it is not hard to offend me these days. But the recent speech by the Premier of Gauteng really rattled me:

Gauteng Premier Nomvula Mokonyane has called on people living with disabilities to “stop relying on social grants and become active participants in the country’s economy”.

Nice...if only if it were that easy!!! This is so offensive on many levels. It makes the assumption that all people with disabilities are just sitting back, happy to sponge of the state...expecting everything to be handed to us.

Thankfully, I do not live in your province, but I do visit it, regularly. I do know many people with disabilities who do live in your province, and have to face dreadful conditions, and discriminations every day, due to YOUR inabilities to apply the existing legislation that we have.

• How do many people with disabilities become active in the country's economy when we are barred from using public transport?
• We have laws, which should mean that all forms of public transport are fully accessible to all, and yet YOU preside over a province which has transport facilities which are inaccessible to many PWD.

• How do many people with disabilities become active in the country's economy when we are not able to access state schools?
• We have a Department of Education White paper which calls for an inclusive educational system, and yet YOU are premier of a province, where most of the schools & tertiary educational establishments are inaccessible to PWD. We have been working with a particular university in YOUR province, which accepts that it is grossly inaccessible, and wants to address these issues, but has no funding (from YOU) to do so.

• How do many people with disabilities become active in the country's economy when we cannot move safely about your cities?
• I challenge YOU to spend a day in a wheelchair with me, touring around YOUR cities, and you will find several occasions where we will be risking our lives, as we have to roll down streets amongst the (inaccessible) minibuses, because YOU have not done anything about providing accessible pavements (curb cut outs, blister paving, etc., etc.)

• How do many people with disabilities become active in the country's economy when we cannot find employment?
• The country has the Employment Equity act requiring YOU to ensure that a minimum of 2% of your workforce are people with disabilities, and YOU are nowhere close to even that pathetically low figure! Once YOU start getting close to the real figure (10 - 20% of any society can be viewed as PWD, then you can start issuing such challenges.

Your speech is sickening, and patronising! I write as a person living with a disability, who has never received a hand out in my life (merely because I was fortunate in my circumstances). But your words speak of a massive lack of understanding of the needs of people with disabilities within your province. The vast majority of people with disabilities do want to work...they don't want to try to live on the pittance of a Disability allowance that is paid to them. But they cannot because YOU have not done your job properly. You preside over a province which allows active discrimination against all people with disabilities every day. How dare you insult us, by suggesting that PWD want to be reliant, and not financially independent. There are so many PWD, living in your province who have no education, no way of leaving their homes, and even if they do leave they face such challenges that you seem completely ignorant of. To release this crass statement on the International Day of People living with Disabilities is sickening.

I have a mind to try to arrange a meeting with you...in any building belonging of your choice, belonging to the Gauteng Province. If I can find any access issues with the building then I shall bring a case against you, and your province in terms of the Equality Act. By barring me from any part of the building due to my disability, would be the same as barring me due to my skin colour. If I cannot find any problem...then I am willing to put a full page apology in the national papers, along with a naked picture of myself… Are YOU up for the challenge???

Please remember, People with Disabilities do not want special treatment. We do not want to live off the state. All we want is the same chances as everyone else. We will know when we have true equality when people with disabilities get the same lousy damn service as everyone else. We don't want your money, your sympathy, or your words. We DEMAND our rights. The same rights as everyone else, which your province ignores on a daily basis.

We will know when we have true equality when people with disabilities get the same lousy damn service as everyone else. We don't want your money, your sympathy, or your words. We DEMAND our rights. The same rights as everyone else, which your province ignores on a daily basis.

So Premier, stop relying on words, and inaction, and start making active steps to ensure that PWD can become active in your province. We expect, and have a right to: accessible homes, accessible public transport, accessible public buildings, accessible cities, and streets, accessible schools, colleges, universities. We demand that YOU obey the laws of the land, and meet the targets set by the Employment Equity Act. We demand that every single part of every single public building is accessible to all...

FIFA Madness

Just in case there is anyone left in SA still not aware that something big is happening next year…

This week is a mad week for me, and my company, on our various 2010 projects, especially the ones in Cape Town. We have various inspections, and also the draw tomorrow at the CTICC.

The whole FIFA project is incredibly complex. I am sure (and hope) that the events tomorrow pass off without incident. Anyone in Cape Town, should join in the party on Long Street (part of the top section is closed, and a huge screen is being positioned so people can follow the draw from there.

Presently the FIFA officials are meeting in Robben Island.

There will be all sorts of speeches by all manner of people & politicians. All these speeches will be extolling the positives of the event, and assuring (and, to an extent, proving) that South Africa is ready for the event.

What they will not show is the sweat behind the scenes… We will be ready; and I am sure that the event will be a HUGE positive to the country. Already, we have proved many, many doubters around the World, and within South Africa wrong. The various new stadia are all (just about!) built. Without a doubt, they are World class stadia. Indeed many of them set new standards in terms of design.

But there is also still much to be done!! These are interesting projects, as on paper, we have many clients; for Cape Town stadium we have the following clients:

• the City of Cape Town, as they own the Stadium;
  


• South Africa tax payers, as much of the funding came out of their pockets, at both national level & provincial;
  


• FIFA - they 'own' the event, and all the rights (and make the most money!); they have an overlay, in terms of sponsorships, VIP's, security, etc.
  


• The prospective tenants of the Stadium (which, if it is to make sense, and money, in the future, will have to include Rugby, both national - Test matches, and regional - Western Province will have to move here from Newlands), and the soccer teams that will be based from here.
  


• 
  
  SAIL Stade de France, who will be the operators into the future of the Stadium
  
  
  

  
  

Sometimes these different 'clients' have different, and even opposing requirements…

So I as I am a bear of little brain, I have made it clear & simple to me & my own team. Our clients are the people with disabilities who will use, work, and play in this stadium for the World Cup, and hopefully for many other events into the future. If they come, and they can use the facility in comfort, and safely, then we have done our little bit into this HUGE project…

I wish we had more time now, to appreciate the privilege of being able to work on these projects. Hopefully these Stadia will be still standing, and providing entertainment (and jobs!,) to a huge number of people, long after I have shuffled off...

Apartheid by design: Disabled people in PMB

For fear of being accused of a little self promotion, and I would hardly call myself an "Activist", this is a brilliant article:

ONCE upon a time in South Africa, buildings had separate entrances and facilities for people of different races. The practice was outlawed as discriminatory along with the policy that created it: apartheid.

That discredited philosophy was replaced with a Constitution hailed for its commitment to human rights that is also enshrined in the Promotion of Equality and Prevention of Unfair Discrimination Act of 2000. Despite this, another kind of apartheid still operates: discrimination against people with disabilities. Inaccessible environments have been called “apartheid by design”.

Have a look at the full article, and please comment!!

More 2010 updates - from the field

Today was a great event at the Nelson Mandela Bay Stadium. The general public were invited to 'inspect' their stadium. We did not get quite the numbers we were expecting...but a great time was had by all that turned up, I think! Most of these were taken early on, before the crowds arrived.

If someone can tell me how to upload video onto the site then I can upload some clips which demonstrate very clearly how the design keeps the noise in...the stadium was BUZZING!!! Sorry for the quality of the photos...taken with my cell phone.

---

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I have also included some photos of Greenpoint (not quite as advanced), taken last week in the rain. I think the scenes are more like a shipyard than a stadium at the moment!

The Future of Social Networking? Google Wave...

I am quite a fan of Google; I use Gmail, Reader, Calendar, Documents, etc. So I have been reading about the development of one of its new products - Google Wave, with great interest.

What is Google Wave?

Well, it is quite unlike anything else that we have at the moment. It is billed as a "real time communication platform". But it is a bit like email, IM, blogs, Facebook, Twitter, all rolled into one.

Why am I interested?

I can see some huge benefits for business use, as well as private use. My interest in these new developments is two-fold. I suppose I am a geek wannabee, and I enjoy new technologies, but I also want to see how we can utilise new technologies to allow people with disabilities to better take part in society, and specifically employment. I can see some great ways that Google Wave could be used / developed. Especially for people who, for whatever reason, may be working remotely, but with a team.

So the details, what is it really, what does it look like, and how do you use it?

One of the best sites which explains it is on http://mashable.com/2009/05/28/google-wave-guide/ where they use the system and detail it. They use wave, I think as it can be added to - a Wave is the overall picture, which is made up of wavelets, wavelets are themselves made up of blips, and the blips can contain documents, web pages, messages, pictures, etc.. So you start with a ripple, and anyone can add more and more as you advance. Much of the individual details are methods that many of us are already comfortable with…but it is the way that they are drawn together into one place, is the key here.

• Real Time - like with IM, you see the person typing.
• Wiki - anyone (invited) can add, change, and everyone can see the changes, and who, and when the changes were made.
• Add ons. There are many applications, add-ons, & extensions that can be made to the system, and being open source, I think we can expect many more to be developed in the future.
• Sharing - by merely dragging and dropping, everyone can have access to you documents.

It is also possible to embed the wave into an existing website.

It is going to be interesting to see how this develops after it is launched. But I am sure it is going to be the next big thing…remember, you read it here first!!!

If you want to sign up to the development then go to https://services.google.com/fb/forms/wavesignup/

Disabled Parking Abuse at The Palms AGAIN!!

Yet more accessible parking abuse at The Palms in Cape Town. This slot is always taken by some idiot.

What is Accessibility?

Accessibility is a general term used to describe the degree to which a product (e.g., device, service, environment, building etc.) is accessible by as many people as possible. That is easy isn't it?

Well, no, it is not that easy. I want to explain what accessibility is all about, and why you need to think carefully about it.

I was looking to book a B & B for myself. So, like most people, in the modern world, I fired up my web browser and began to search for accommodation in the area where I want to go. It is a popular area, and I shall be travelling there out of season, so there was plenty of choice. Or at least it appeared that there was plenty of choice. As I am a wheelchair user I need to find accommodation which is accessible. Now, according to regulations, and establishment offering more than 25 beds has to be accessible…but we all know that laws like that are not enforced, and just plain forgotten about here. So once I narrowed down my choice, I had to contact each of the establishment to find out if they are accessible.

This goes back to the understanding of what is accessible.

Me: "Excuse me, I would like to come and stay with you, are you accessible to wheelchair users?"

Them: "Yes, we are, can I take your booking?"

M: "So you have an accessible room?"

T: "Yes, we do. It is a large room, with a large bathroom, with enough space for a wheelchair."

M: "Great, so the WC has grab handles, so I can transfer, and the shower is a roll in shower with a seat then?"

T: "……………..oh……..err……..no. There are no handrails, and the shower is up a step"

M: "so I guess you are not accessible then?"

T: "no, I suppose we are not."

M: "thank you for your help, but unless I am able to use the loo, and take a shower when staying with you, I shall have to take my money elsewhere. It is a shame, as looking at your website, we were looking forward to staying with you."

This basic conversation has no been repeated at 6 different locations…with basically the same outcome. And this is the problem, that many people face on a daily basis not just with accommodation, but restaurants, shops, transport, houses, etc. I am not writing this, looking for sympathy, or as a sob story, but to try to explain how accessibility may effect any of us, at any time.

• Accessibility comes down to a way of thinking, it is about giving a shit about other people.
• Accessibility is not just a tick box.
• Accessibility is a mind-shift.
• Accessibility is a personal issue.
• Accessibility is a business issue
• Accessibility is a human rights issue.

There are some excellent laws in place (such as the Equality Act) which outlaw discrimination such as this. But I would hope that people do not always have to be forced into providing accessibility. There is a clear business case. Each one of these establishments has lost my business, and the business of my family. Had one of them been able to accommodate me in comfort and safety, then I would have told others (as unfortunately, it is still unusual to find accessible facilities in South Africa).

Can I give you all a challenge? For the rest of the day, imagine that you join the 10-20% of society who live with a disability? Imagine, that you lose your sight, or the use of your legs, or your hearing, or whatever. Take a look around you. Could you continue doing what you are doing now? Could you even get to where you are now? If the answer is no, then does that loss of ability have a direct bearing on your activity, or could that activity be adapted so that you could still carry it out with a disability? If the answer is yes…then double check. Have you made the same mistake as the example above and assumed accessibility. Is there a step at the entrance to your building? Is there a toilet that a person in a wheelchair could use? And this even applies if you are at home, and not at work. Maybe a family member or a close friend becomes disabled (86% of people with disabilities were not born with the disability). Could they visit you? Do you give a shit??

So Sorry!!

I have certainly been ignoring my blog here for a while. I should try to rectify that I guess. My (feeble) excuse is that I have been rather busy lately. The following photos show what I have been busy with

Stem Cell Ethical Concerns

This particular post should be read after (at least!!) reading the previous 3 posts - Stems Cells 101, & the Potential Impact of Stem Cell Research Part1 & Part2.

I shall try to outline some of the concerns surrounding this issue. Again, this is done in a rather over-simplified manner.

Of course, I think almost everyone involved or interested in the whole debate, is hoping that the recent research where adult stem cells, or even cells harvested from the umbilical cord will prove to be a successful route in the future. This technique should remove many (but not quite all) of the concerns that people have on the issue. I promise you that no scientist is choosing to research this area because of the ethical issues, or merely to make use of spare blatocysts that there may be in his lab. Every researcher I have met in this field is fully aware of the sensitive nature of the research. Certainly none of them are the evil mad scientists, that some sections of the popular media try to portray them as! (Well OK, I cannot comment on some of the North Korean labs…)

The main concerns are:

• Human embryonic stem cell research involves the destruction of a blatocyst, which some people regard as a human life.
• Some people have an issue with creating a blatocyst with the sole intention of destroying it.
• A concern is that this research could lead to the exploitation of women, as more and more donor oocytes may be needed.
• Some people object to the mixing of human and non-human genetic material in the research.
• Some sections of society even have objections to any advances in not only stem cell research, but genetics, molecular biology, and many other similar medical interventions are manipulations which undermine human dignity.
• There are other concerns, certainly but I hope this touches on the main ones.

Any research on human embryos is going to raise profound questions about the status of the human embryo, the extent to which it is justifiable to use human embryos to expand knowledge and ameliorate human suffering, and the conditions under which these goals may be pursued. Many people hold the view that a human embryo (of any stage) is morally equivalent to a human life. Some claim that any manipulation of a human embryo undermines human dignity. These are philosophical views which should not just be ignored. However, these philosophical views do not always manifest themselves culturally in our societies. A natural miscarriage (which, I have had the misfortune to witness) is a harrowing experience, but we do not conduct a funeral afterwards. Similarly, for most couples, the excess blatocysts from IVF treatments can be disposed of without any need for ceremony or specific interventions that we may feel appropriate for, say, the death of a child. Many religions do not recognise the human embryo as human life until a specific stage (around 40 days after conception).

I do feel that any discussion on the ethics of stem cell research should respect these deeply held views. But I do not feel that these, alone, should bring all research in these matters to a complete halt, as the potential benefits to so many people are so huge. But I do feel that these views should assist us in developing workable ethical codes, which take into account the special status of the human embryo, and try to protect that status in a serious manner.

An excellent overview can be read at

http://books.nap.edu/openbook.php?record_id=11278&page=47

Potential Impact of Stem Cell Research (Part 2)

Right, so we have covered what stem cells basically are (Stem Cells 101), and I touched on their potential impact in the next post Potential Impact of Stem Cell Research Part 1. Now let's look at the more controversial issues of cloning. I think this is the area which is most misunderstood, and seems to cause most problems for many people.

There are two distinct subjects to cover:
a. Therapeutic Cloning.
b. Reproductive Cloning.

Therapeutic Cloning
This is where cloned tissue is used to "grow" replacement organs for people who have sustained damage to their organs (through disease, or injury, for example). It so happens that this month (August) is organ donors month. I would encourage everyone to consider signing up for organ donation. Discuss it with your family, as obviously your decision will effect them. But organ transplants are becoming more commonplace (as we know, the first heart transplant was performed in SA). Transplants are held back for 2 main reasons; the availability of organs, and also the fact that the human body tries to reject foreign tissue. To get around the second problem, the recipient has to be pumped full of very strong anti-rejection drugs (which also leaves the person with vastly weakened immune systems). This can often lead to complications, other infections and death. Our knowledge is increasing in this though. The concept of therapeutic cloning is to use (ideally stem cells derived from that person, from potentially umbilical cord cells, or from adult stem cells) tissue that has been grown from stem cells that have had the recipients own DNA introduced into them (by the use of Somatic Cell Nuclear Transfer - SCNT). This would negate the rejection problem. Recently, in Imperial College London, a heart valve was produced and transplanted into a patient. Because stem cells have the ability to grow into any cell, then it is hoped that almost any tissue or organ could be produced in this manner. The potential of this is huge, and could dramatically improve the survivability of people who are severely injured in car accidents, properly functioning pancreases may be grown for people with diabetes, brain tissue producing the right amount of dopamine for people with Parkinson's Disease, new kidneys for people in renal failure, eye tissue & retinas for people with different conditions causing blindness such as RP, the list is very long… Of course we have a long way to go, and it may well be that we have some more huge hurdles to overcome. The mass media has overplayed the timings (and ease) of this science. It is hugely complex, and the likely benefits are still some time away.

Reproductive Cloning
Reproductive cloning is where a completely genetically identical embryo is produced. Think Dolly the sheep (whose stuffed body can be viewed in the Museum of Scotland), or Booger the pitbull. Again, I feel that the mass media are at fault in badly reporting the issues around reproductive cloning, with visions of armies of identical Aryan peoples. The media has also falsely reported that human cloning has already happened in some countries, but a more detailed look at the evidence would suggest that this is very unlikely. Reproductive cloning is also fraught with complex problems (aside from the ethical considerations). There is also a complete misunderstanding about what a clone is. A clone is a genetically identical twin. But this would not mean that the clone would think exactly alike to the donor. But, as we know in the nature / nurture observations, genes are only part of the make up of any characteristics. Identical twins, that have been separated at birth, while still displaying obvious visual similarities, can often grow up to have completely different characters, molded by the environments in which they grew up in. Dolly would not have had the same thought processes as her donor animal. Very few people see any benefit of producing human (or indeed any animal) clones, as there is no increase in the genetic profile. There is the theoretical possibility of producing a reproductive clone with the sole purpose of harvesting donor organs, but there are obvious moral & ethical issues to this. But nevertheless, it is important that any discussion on ethics and morals around this subject must also consider this possibility.

Potential Impact of Stem Cell Research (Part 1)

Stem Cells 101 gave a very brief, simple look at stem cells. Now we will look at the possible areas in which they may be used. I really want to unpack this before touching on the ethical issues. In this post I am concentrating on impairments and diseases. Part 2 will look at the potentially more contentious issue of cloning.

It is important to realise that while there are applications were adult stems cells are being used in medical procedures to good effect (in particular bone marrow transplants to treat Leukemia, and one of my friends is alive today because of that particular procedure!), presently there are no medical procedures being used based on Embryonic stem cells. So is all this noise a waste of time? Well, no. Research is still in the early stages. Indeed the first time that human stem cells were first derived was only in 1998. In the 10 years since then a lot has been found out, but this has also been hampered by restrictions, many political in nature. Certainly no one is doubting that this is a complex part of medical science. The mass media has not helped, by some of the very poor reporting, and exaggerated claims that they have fed the general public. Even if this research will produce cures & applications (which I am confident they eventually will), these are not "just around the corner", as has been reported in many instances in the previous decade. The reality is that I shall keep my wheelchair for the time being, and my father is probably too old for him to receive any cure for his Parkinson's Disease in time.

But the potential of stem cell research is enormous. Not only for the number of diverse conditions that may finally have a cure (or even a prevention), but also because of the nature of many of those diseases. Medicine has made some amazing advantages over the last century, and probably each of either would be, or have a close family member who would have died, if it were not for some medical intervention or other. Certainly 75% of my immediate family would be dead, including me. But there are still many really serious conditions and impairments that we just have no answers for yet. Many of these have a profound effect on peoples' lives. The possible diseases and impairments that stem cell research has the potential to effect includes (this list is not meant to be exhaustive!):

• Neurological
• Parkinson's Disease (think Michael J Fox, Muhammad Ali)
• Spinal cord injuries (Think Superman…and...dissol!!?)
• Retinal disorders (Stevie Wonder)
• Multiple Sclerosis (up to 150 out of every 100,000 of the population)
• Alzheimer's Disease (26.6million people worldwide think Ronald Reagan, Terry Pratchett), although it has to be said that some recent research in this particular field is painting a less promising picture than we had thought...
• Motor Neurone Disease (Prof Stephen Hawking, David Niven)
• Muscular Dystrophy
• Huntington's Disease
• Spinal Muscular Atrophy

• Others (Blood & Pancreas mostly)
• Leukemia (2% of all cancers)
• Sickle-cell Anemia (especially important to us in sub-Saharan Africa)
• Immunodeficiency (including HIV & AIDS)
• Lymphomas (5% of all cancers)
• Lupus (Michael Jackson, Elaine Paige Seal)
• Arthritis (Nelson Mandela)
• Bone Marrow Failure
• Diabetes (171million people or 2.8% of the global population, and rising, rapidly)

Of course, I am not claiming for a moment, that stem cell research will find absolute cures for the above, or any of the above. That is a common mistake made by the mass media. It may be, that some of the hurdles that researchers are finding out about, that they are insurmountable. But the research is looking very exciting in many of these different areas. I doubt we shall see any cures in widespread use soon. The best estimates seem to be looking 3 - 10 years ahead. That is also sometimes used as a argument against stem cell research; they ask "where are the cures?" This is not unreasonable, but the reality is that we do have some (small) cures and advances already, but also that this whole area of research is very complex, and by the nature of the research much of it is slow moving. Remember human stem cells were only first isolated in 1998…a mere 10 years.

Next post will be looking at the more contentious (and I would suggest less well understood) issues of cloning, both therapeutic and reproductive cloning. Only then, once we can agree some baselines, should we begin to think about some of the ethical issues around this research.

A nice quote to get you thinking

I happened across this wonderful quote by Susan Wendell, from her book "The Rejected Body: Feminist Philosophical Reflections on Disability". I think it is worth sharing:

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.