Autism Rights in South Africa: an opportunity lost

This essay was written in 2013, but not accepted for publication.

Autism Rights in South Africa: an opportunity lost

South Africa is a nation with a Constitution hailed as one of the most progressive in the world. It states that discrimination on the grounds of Race, Religion, Gender, Sexual Orientation and physical and mental disability is prohibited. With that, one would think that Autistics in South Africa are quite well off in comparison with other countries. Sadly, that is not the case. The state’s capacity to uphold the rights of the disabled has been undermined by historic factors, bad recent choices and current realities.

In 1948, the then South African Prime Minister Jan Smuts lost the General Election to the National Party. The National Party had been opposed to South Africa joining World War 2 on the Allied side, and introduced apartheid. This was a system of laws intended to discriminate against non-white South Africans. Skilled, highly paid jobs were reserved for whites only. Non-whites were given inferior facilities, treatment and education. Black South Africans had it the worst but Indian South Africans and Coloureds (mixed-race South Africans) also faced discrimination.

In the 1960’s the international community began placing sanctions on South Africa to force the government to abandon apartheid. Economic, sporting and cultural boycotts were applied. Companies disinvested, sports teams stopped touring South Africa, South African sportsmen and women were banned from the Olympics, certain films and plays were not shown here and research and technologies were no longer shared with South African scientists and institutions. Despite this, apartheid persisted until F.W. De Klerk became president in 1989. In 1990 Nelson Mandela was released from prison and in 1994 he became South Africa’s first ever democratically elected president. In 1996 Mandela signed South Africa’s Constitution into law.

As the Constitution proclaims the rights of the disabled, the state is supposed to enforce them. Due to our racist past, the priority has been to rectify race based inequalities. This has often been at the expense of the rights of other marginalised groups, particularly the disabled. A newspaper article that I read claimed that disabled job-seekers in South Africa were being overlooked for jobs. The overwhelming focus on race meant that discrimination against the disabled was able to continue without proper intervention to stop it.

After 1994, there was a concerted drive to eliminate past inequalities. White government employees were offered retrenchment packages and non-whites were actively recruited. Transformation was rushed, and this was the first mistake. The resignation and early retirement of large numbers of skilled and experienced civil servants eroded the institutional knowledge so vital to any organisation’s proper functioning. Many retrenched government workers had to be hired back at great cost as consultants to train their replacements. Despite this, the civil service still hasn’t recovered completely. Recent audits by the Auditor-General’s office still reveal massive irregularities and inefficiencies. This has affected the state’s ability to deliver services to all people, including the disabled, and to protect everyone’s constitutional rights.

Because of the sanctions applied during apartheid, a lot of research into autism did not reach South Africa. In addition, technologies that could have helped autistics were prevented from coming here. Apple briefly had a presence in South Africa before disinvesting. It returned after the end of apartheid and has a full scale presence now. This is fortunate, as Apple products, especially the iPad, have been used in teaching autistics.

In 2007 the subprime crisis began, triggering a global financial slowdown. In South Africa, tight restrictions had prevented local banks investing in toxic assets. Many bankers who had previously griped about the laws thanked their lucky stars for them. Despite this, the slowdown has still had a negative effect. Exports have fallen and this has seen the South African economy contract and shed large numbers of jobs with a corresponding drop in tax revenues. Consequently, government funding to charities and non-governmental organisations (including those providing training and support to autistics) has been cut.

Civic Society in South Africa has taken a role. South African golfer Ernie Els has an autistic son and began the Els for Autism Foundation. In 2009, it held the first Els for Autism Pro-Am tournament in Florida. The event raised money for The Renaissance Learning Center, a school for autistic children.

The Key School, founded in 1973, is the oldest school for autistic children in South Africa. In 2011, it pioneered the use of iPads as aids for autistics in South Africa. In 2012, it nearly had to close down due to a lack of funding. The National Lottery Fund initially refused help, then reconsidered. The Els Foundation and Oppenheimer Memorial Trust also gave funding. Currently, Scott Allen and David McAlpine are travelling from Casablanca to Johannesburg using only public transport to raise R100 000 for the Key School.

Autism South Africa (website http://www.aut2know.co.za/) was founded in 1989 in South Africa. It has a National Executive Committee. Pleasingly, Craig Thompson, one of the current committee members, is an adult autistic. The organisation recently launched a poster campaign that inadvertently caused an outcry. Posters were hung mentioning myths about autistics, like “Autism is for violent people”. The posters refuted the myths, but most people saw the massive slogan, not the small print refutation. The posters have been withdrawn, but a television advert that also corrected the myths went ahead.

One of the downsides of South Africa’s reintegration into the world community is that antivaccination propaganda has begun springing up. An increasing number of comments making false claims about vaccines (including the nonexistent correlation between vaccination and autism) have shown up on local news websites. Some have repeated the “Bill Gates admitted that vaccines are to depopulate the world” lie. Disreputable sources of “information” like Natural News have also been cited.

The situation of autism awareness and accommodation in South Africa is the story of an opportunity lost. When I think back to my childhood, I know that things are far better now than they were then. However, I am also keenly aware that they are not nearly as good as they could have been.

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Here’s to 2015

Well, happy 2015 everyone.
From about August 2013 to 2014 I was financially in a hole, though not a big one. That’s now behind me and I’m feeling much more secure.
At work, I left the client I’d worked for for four years, then returned after a week, then left again after a few months, this time for good. The entire situation was a comedy of errors, but less amusing. When I returned, the process to revoke my accesses had been begun and nobody sent through a message to stop it. I was unable to log on to the client’s systems for around a month and had to use a special access to do work. Eventually it was sorted out and I was able to log in normally again. Then my contract ended and I left for good. Amazingly, I wasn’t properly offboarded and I was contacted by both the timesheet managers (who asked why I hadn’t submitted timesheets for several months) and the client’s emergency contact system to confirm my details. I’m currently on a project for a multinational client that’s scheduled to run until early 2016.
I’m looking forward to 2015 in a way that I haven’t looked forward to a new year in a very long time.
“Big Hero 6″ and “The Boxtrolls” were the last films I saw in 2014 and the most enjoyable. “Interstellar” was good, but the exposition near the end felt contrived.
The most disappointing film was Woody Allen’s “Blue Jasmine”. The film is about Jasmine (Cate Blanchett, who won an Oscar for the role), who after exposing her philandering husband as a Madoff-like fraudster and losing everything has to move in with her sister, who was one of the husband’s victims.
In a character-driven film like this, the main character needs to be likeable, relateable, sympathetic or interesting, and Jasmine is none of those things. She is self-absorbed and vapid (a point the film beats you over the head with), and ultimately tedious. If “Blue Jasmine” is typical, then perhaps Allen should concentrate less on releasing a film a year and more on writing his characters better.
Some celebrity news that made me smile was that Robbie Williams intends to quit music to become a car mechanic. His reason was that he’d been in music for over half his life, and he was tired.
Personally, I wish Williams all the best in his new career, and I also wish that I had the money to do whatever I want.
The most shocking celebrity news of 2014 for me involved another Williams. On August 11, comedian Robin Williams was found dead. He had hanged himself. I’ve seen Williams in numerous roles, from “Good Morning Vietnam”, to his turn as the Genie in “Aladdin”, and his Oscar winning performance in “Good Will Hunting”. He was a brilliant performer. It’s a shame that possibly his last role was in the final “Night at the Museum” film, which has been slammed by critics as a pallid rehash.
Williams was in a category that is known as a suicide risk: white male nearing the end of his career, and starting to develop health problems. The most popular article on Cracked for 2014 was “Robin Williams and why funny people kill themselves“. If you know someone who is a clown, please read the article. If you have considered committing suicide, I ask you to please read “I Want To Live” by Erika Moen, who was abused as a child. I also beg you to pick up the phone and dial a suicide hotline. Lifeline South Africa’s number is 0861 322 322. Other numbers are listed here.

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Cadre Deployment must go

I’m on leave. I don’t usually talk about politics, but since this is my blog, I’ll write what I want to.
We’ve had load shedding. A lovely euphemism that means that power had to be cut to areas in rotation to ensure that the entire grid didn’t go down. What made it even worse is that Tshediso Matona, CEO of Eskom, denied that there was a crisis.
If the emergency generation capacity (diesel generators) was being fully used and power still had to be cut to prevent the grid from going down, then yes, there is most definitely a crisis. Hiding behind semantics won’t change that, and will just annoy everyone.
The courts threw the case against Shrien Dewani out. For the benefit of those who don’t know, in 2010 Shrien Dewani and his wife Anni were honeymooning in South Africa when Anni was murdered in what was thought to be a random criminal act. Then strange facts started to emerge about Shrien, like he was bisexual and hitting up gay dating sites during his honeymoon. When the accused were arrested, they claimed that Shrien had been forced into the marriage, and had asked them to set up a hit and disguise it as a robbery gone wrong. Eventually, after years of wrangling, Dewani was returned to South Africa and put on trial. After the prosecution put forward its case, the defence team applied for a discharge. High Court Judge Jeanette Traverso granted it.
I’m not a lawyer, but as I understand the discharge, after the prosecution put forward its preliminary case and before the defence had a chance to attack it, the judge was asked to assess the case and, if the case at that point was insufficient to secure a conviction, the discharge would be granted and the accused set free.
What is annoying is that for years, the authorities insisted that Shrien did it, and that they would prove it in court. Yet they were so inept at investigating and assembling their case that when the time came for them to present it, they failed utterly. Shrien is back in the UK and it looks like there won’t be a second bite of the cherry.
SARS is in the middle of a huge fight. Two high-ranking officials were suspended and have had their suspensions overturned. There are claims that the reason for the suspensions is that a large amount of excise duty was not paid for the importation of shirts bought by the ANC and branded with that party’s colours.
There is one thing that links the three things above together: political interference. More to the point, the illegal action known as cadre deployment. That’s the policy of making political appointments to non-political positions. The courts have declared it illegal, but our “don’t give a damn” government has persisted with it.
The problems with cadre deployment are obvious. Firstly, because political considerations trump professional ones in filling the role, the deployee is frequently incompetent. We have seen this over and over in state owned enterprises. Secondly, and far more dangerously, political concerns trump professional ones in the actions taken. The result is choices are made to benefit the ANC, not the country as a whole. There have been claims that areas that voted against the ANC experienced service cuts; claims I find plausible.
One of two things needs to happen. Either the ANC needs to accept that cadre deployment must be abandoned; or it must be voted out.

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About my birthday and other thoughts

This is a free-flowing post. Forgive me if it is a little disjointed.
Yesterday I turned 38. Yes, I share a birthday with Winston Churchill and Albert Kesselring, among others. My father has his birthday on December 3, so we had a joint birthday celebration. It was lovely. I received a number of lovely presents, and we had sushi and pâté followed by a braai. Several guests attended, including my sister and her family, an uncle and aunt of mine, and some of my parents’ neighbours.
One historical figure who was believed to be autistic is Wolfgang Amadeus Mozart. I’m not convinced. The evidence I’ve seen supports a diagnosis of Tourette’s Syndrome, not autism. I’m aware the two conditions are often comorbid, but I think it unlikely that Mozart was autistic.
And now onto the big one: Bill Cosby has been accused of sexually assaulting women for years. So far, over 20 women have come forward to accuse the comedian of rape. Cosby’s case has sharp parallels with that of another person.
Jimmy Savile was a celebrity noted for his charity work, especially with vulnerable children. But after he died, a shocking truth emerged.
Behind the carefully cultivated façade, Savile had used his name to gain access to, and sexually exploit, the very children he was supposedly advocating for. On several occasions, people had tried to expose the truth, only for Savile to threaten and intimidate them into silence. Only after his death were people comfortable enough to come forward.
Cosby’s charity work in education is known. He has raised literally millions for universities. When an accuser took her story to The Enquirer, Cosby (it is claimed) used his status to get The Enquirer to drop the story. Years ago, Cosby faced a lawsuit by a woman alleging sexual assault. The case was settled out of court.
Is Cosby a sexual predator who used his name and reputation to shield himself? The evidence is looking very strong. Rape is known to be very underreported and when a rapist’s victim steps forward, it can give his other victims the courage to do the same. It would appear that, yes, for years Cosby preyed on women. The difference between him and Savile is that Savile died before he was exposed. Cosby was exposed while still alive.

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On Court Cases and a successful vaccine programme

This week was a good week.
In 2009, South Africa introduced vaccination against pneumococcal diseases. Here are the money quotes:
“The vaccine has been so successful it has reduced cases of pneumococcal disease in adults who were not immunised, due to the overall reduction of the disease and transmission from children.”
and
“Cases of disease detected before the vaccine were almost 700 a year in children under the age of two, and after the vaccine down to [fewer than] 74 cases in 2012.”
That’s an almost 90% drop in just 5 years. Once again, a disease rate falls off a cliff after a vaccine is introduced.
In Italy, the geologists convicted of manslaughter for failing to correctly predict an earthquake have had their convictions overturned. I raise this as the Italian Courts have also returned a verdict that the MMR vaccine caused autism, and hopefully that will also be overturned.
Finally, another Court Case, but much closer to home.
A man by the name of George Prokas put up a banner labelling the Cell C cellphone company as the worst service provider in South Africa. Annoyed, Cell C went to court to get an urgent interdict to force Prokas to take down the banner. They lost the case with costs. I’m with Cell C, and unfortunately I can vouch that Cell C needs to jack up their act.

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A bad week for vaccines, a dreadful one for autistics

Last week was bad. The best part of my week was work.
I’m part of a team that’s working on a web-based HR Management system. The go-ahead for the release we tested has been given. Also good, I’ve been mentioned in the project emails as one of the two most productive testers. YEAH!!!
And now for the bad.
Researchers have discovered a strain of polio that has mutated to the point where the vaccine is less effective.
Gigi Jordan has been convicted of manslaughter for killing her autistic son Jude. She faces up to 25 years in prison.
And now the worst: Jillian McCabe threw her autistic son London off a bridge to his death. She has been charged with aggravated murder and manslaughter.
When will the murders stop? When will people realise that a child’s autism is not an excuse, let alone a justification, for murder?
When?

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Autistics Speaking Day: skills every autistic should have

This is my post for Autistics Speaking Day. I realise I’m a bit late, but here goes anyway.
There are things that each of us wishes we knew when we were younger. As an autistic, what did I wish I knew, and what would I tell young autistics today? I came up with a few things, but they all apply to neurotypicals as well. I just think that autistics will benefit disproportionately.

Item 1: get organised.
There were times in my life when I was very well organised. It’s a skill that can be learnt and practised. It’s also a skill that can be weakened through non-practise. Being properly organised helps you get things done, and not get into a flurry when things threaten to overwhelm you, not least because it stops the buildup.

Item 2: be willing to try new things.
There is a saying that regret is worse than failure. This is certainly true. Autistics like routine, but some of the most fun I’ve had was when I was prepared to try something new. And some of my biggest regrets are because I never tried things that I could have when I had a chance.

Item 3: learn Martial Arts.
I learnt goju-ryu style karate for 5 years. I had to stop because the kicking gave me a bone spur on my right knee that’s still there. It’s very disappointing, because I would have continued and would probably still be doing it today.
Martial arts are disproportionately beneficial for autistics, perhaps more so than anything else. They are good for fitness, balance, coordination, self control, and dealing with bullies.

There are other things, but those are my top three things that autistics should do.

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