[blindza] DISABILITY OPTIONS NEWSLETTER - JULY 2013
- From: "Tony Webb" <tony.webb@xxxxxxxxxxxx>
- To: "BLINDZA" <blindza@xxxxxxxxxxxxx>
- Date: Fri, 5 Jul 2013 06:42:56 +0200
With apologies for any cross-posting..
DIS-OP NEWS AND VIEWS - JULY 2013
(A newsletter sponsored by Disability Options, Port Elizabeth, to share
information on disability issues. Something for everyone, from AAC to Mental
Health to Zapiro)
FROM THE BRAINS OF THE DIS-OP TEAM
(Well, some folk start with a rather pompous "From the Desk of", which always
makes us wonder whether they keep their brain in one of the drawers) Have you
missed us for the past few months?
After our September 2012 newsletter, we took an unplanned sabbatical so that
Tony could study mental illness from within. (See his personal report below
under Mental Health) To recap: In 2009 we created the Sponge Project on the
simple premise that most disabled people do not know what they do not know. The
two decades since 1994 had brought little improvement in service delivery to
disabled people in South Africa. There was still no toll-free number such as
0800DISABLED, to make disability info freely accessible to all. The SA
Disability Alliance of NGOs seemed to be a secret society without a website or
newsletter. So government and businesses remained painfully ignorant about
disability issues and the disability sector had failed to do much about it.
So, after exhaustive research, we launched our SMS Disability Info Service. By
answering nearly 400 enquiries between 2010 and 2012, we realised that once
they are out of their comfort zone many of the paid staff and the volunteers at
NGO's in the disability sector also do not know what they do not know. In
September 2012, at the start of another depressive episode, Tony became unable
to cope with the stress of operating the Sponge Services. In November, the
NCPPDSA kindly offered to take over our SMS service and the 072 172 2623 modem.
We were very pleased that such a large NGO would at last provide a general
disability info service in South Africa.
So now we are restructuring our services -
* The SMS Disability Info Service has been taken over by NCPPDSA. The SMS
contact number is still 072 172 2623.
* thespongeproject@xxxxxxxxx is no longer in use.
* The Sponge Project website, http://thespongeproject.yolasite.com , will be
renamed and updated and continue to provide information to individuals and
organisations in the disability sector and beyond.
* The Database of Resource Contacts has been removed from the website and will
be for our internal use only.
* The SPONGE NEWS AND VIEWS will in future be called the DIS-OP NEWS AND VIEWS.
So, with apologies for using some of the copy we prepared for October 2012,
here is the latest offering from Dis-Op?..
AFRICA
* We have had a few requests for info from other parts of Africa. If your
organisation has branches or contacts in other African countries please let us
have details to add to our database.
AWARENESS, ADVOCACY AND RIGHTS
* Wheelchair Wednesday ? This very successful awareness and fundraising
campaign was the initiative of our own Brian Bez, of APD NMB. We hope Bez will
soon roll it out nationally.* DIGNITY - It appears that government?s con cern
stops at the top!
Dear Zapiro, please polish your spear and help us draw attention to the
following shameful situation. Keryn de Bruyn, a Community Service
Physiotherapist has written about what dignity (or the total lack of it) often
means to disabled people?..? For people in rural communities there are very few
ordinary toilets and the most frequent practice is squatting in the bush. Some
homesteads have government-built toilets but these are not wheelchair
accessible. For people with physical disabilities this means a devastating loss
of privacy, dignity in the daily practice of going to the toilet. Most people
will be assisted to lie on the ground, in the grass, in order to relieve
themselves. This is unhygienic, undignified and humiliating?* THE DISABILITY
ACT ? Any news? In September 2011, our President Jacob Zuma revealed that a
Disability Act is being crafted to deal with enforcement, non-compliance and
implementation of the UN Convention on the Rights of Persons with Di
sabilities. Has your organisation been consulted?
REHABILITATION
* AAC - Inclusive Solutions are looking for an outstanding individual to join
their team as 'Product and Sales Specialist' See their website for the JD. If
you are interested in working with SA's leading supplier of Assistive
Technology and AAC resources, contact lisa@xxxxxxxxxxxxxxxxxxxxxxxx
* BLIND - See http://www.amazingjeffo.com/rules_of_courtesy_to_the_blind.html
for the ?Ten Rules of Courtesy to the Blind? kindly posted by Jacob Kruger.
* RuReSA ? The fearless rural therapists are designing a database of info about
rural hospitals to assist with the recruitment and placement of community
service therapists. If you have any ideas or would like to assist, please
contact Maryke Bezuidenhout <marykebez@xxxxxxxxx>;
* DEAFBLIND ? Contact deafblind-join@xxxxxxxxxxxx to subscribe to a new email
list called DeafBlind in Action.
* HIV/AIDS - info4africa (formerly HIVAN) has a country-wide database of more
than 12 000 sup port service providers in South Africa. Info4Africa?s database
is available in directories for each Province; on mobile phones - call
*130*448# (free call except on Vodacom whose users must dial *120*448); SMS
45080; or at www.info4africa.org.za. Also follow them at
https://www.facebook.com/info4africaor http://www.twitter.com/info4africa
* MENTAL HEALTH - ?I am not ashamed of having had several episodes of
depression over the past 20 years and I have certainly not made a secret of
it.I thought each time that the depression was due to stress from life-changing
events such as family members becoming severely physically disabled, or my
frustration with my perceived lack of progress with various projects I had
initiated to support the disability sector.Over the years I was given many
different drugs including Prozak, Efexor, Serzone, Lexamil, Paxil, Lorien,
Serlife and Cymgen and I endured a fruit salad of at least 12 unpleasant side
effects. After each episode I of course ignored med ical advice to stay on a
maintenance dose to prevent a recurrence and went straight back to the
disability support projects.But I realise now that subconsciously I was
increasingly stressed by a growing backlog of jobs that needed doing around the
house, and by never making time for personal leisure activities. For the
episode that started in September 2012, I again used Cymgen. But this time,
having learned from the previous episodes, I terminated the Sponge Project so
that I could not resume my bad habits when I felt better. That in itself was
initially very stressful. But after five months the depression disappeared as
abruptly as it had started. Apart from the Cymgen I think that a contributing
factor was a pep talk from my eldest son who said I should sort out my
priorities in life and also get on with maintaining the house.That worked for
me, and since then I have tapered the Cymgen down to zero and began fixing the
house. I kept a diary of the jobs that were complete, and had a list of those
still to be done as that was therapeutic in itself. The results were
dramatic.Being trained in rocket science, I really enjoyed working on the
backlog of horticultural, civil, woodwork, electrical and electronic jobs.I am
now determined to keep off the drugs, and am studying alternatives.OK, my case
may be very different to those where there are complex inter-personal problems,
but I hope that this open account will be of interest to others, encourage them
to speak out about their own case and thereby contribute to reducing the stigma
associated with mental illness? If you would like to discuss any of this you
are welcome to contact tony.webb@xxxxxxxxxxxx
* PARENT AND FAMILY SUPPORT - * The Encouragement Network is an informal social
initiative providing support for the parents of disabled children who reside in
the East London area. The network is coordinated using Facebook, e-mail and
SMS. They organise quarterly gatherings for parents facing similar challenges
to l augh, relax, connect with and encourage one another. Visit
http://www.facebook.com/TheEncouragementNetwork for more information and photos
of the launch.
* Other parent and family support groups we are aware of include -Able
Families, Alzheimers Families, Aspergers Support, BIASSS, Blind Parents
Network, Cerebral Palsey (Hambisela training), Friend for Life, Graaff Reinet
Parent Support, Grahamstown Parents Network, Headway, Muscular Dystrophy
Parents, Orange Farm Mothers (Afrika Tikkun), PACSEN (Parents Association for
Children with Special Educational Needs), SADAG (SA Depression and Anxiety
Group).Please don?t struggle alone. Contact us if you can?t find the support
you need.
EDUCATION, aka ANGIE'S FOLLY
* We hear that some therapists working in rural areas are concerned that after
all the effort they put into rehabilitation, most disabled kids never get into
an LSEN or mainstream school. Surely rehab is futile unless it leads to
education and beyond? When will the rural educator s work together to sort that
out?
* The Higher and Further Education Disability Services Association, (HEDSA) are
looking for news for their website/newsletter www.hedsa.org.za ? contact Yanga
Futshane@xxxxxxxxxx
* NMMU Disability Services Unit issued a newsletter in Sept 2012.
SKILLS TRAINING
* Protective workshops ? a national team is working on transformation and the
enterprise development process. Will there be a cross-disability solution? Is
your organisation being consulted?
* History has a habit of repeating itself ? we launched the AmaZingZing
Initiative in Port Elizabeth in 2004 as an alternative to the traditional
approach to protective and sheltered workshops. The initiative died under a
deluge of apathy as, at the time, the Dept of Labour was promising salvation
with learnerships through the SETAs and ESDAs, and later the SEDA and NEF.
History has shown that even if disabled adults meet the admission requirements,
only a fortunate few can cope with a learnership as most are not yet work
hardened. Maybe some of the AmaZingZing concepts can be used in the current
transformation exercise.
EMPLOYMENT
* Waiting for some good news..
ACCESS
* Amanda Gibberd , <info@xxxxxxxxxxx>, has been appointed Director of Universal
Design in Public Transport Projects at the D of Transport Directorate: Public
Transport Network Development.We that hope she will rattle a few municipal
cages and get some of those 2010 World Cup buses on the road.
* The latest newsletter on ?Accessible Transport around the World? is a timely
reminder of what we could achieve in SA if we all worked together.
* Has anyone got a spec for toilets and bathrooms specifically for disabled
children for use by cr?ches and schools.
BACKWORD
* An IT Professional recently commented on the use of mass emailing with
exposed email addresses ? ?These should be Blind Carbon Copy (BCC) and thus
hidden. Not only is this a breach of privacy but it is also a primary mechanism
for spammers to steal email addre sses. Any one of these recipients may have
viruses on their PCs and this is the primary way spammers pick up active email
addresses. Have you or your organisation got an IT policy?
* When did you last update your Last Will, Living Will and Power of Attorney?
Please don't leave a mess for your family to sort out.
* Mark Twain once said ?You should plan for the future because that is where
you are going to spend the rest of your life.
Regards, Tony and Tim Webb, Disability Options, Port Elizabeth.
tony.webb@xxxxxxxxxxxx , http://thespongeproject.yolasite.com
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