What’s Next? severe disabled wish. guest Author: petergibilisco Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

I wrote and published this article on OnlineOpinion over 11 years ago. It is troubling to me that nothing much has changed over all that time.

I am still trying, even though I’ve got 1/4 of the abilities I had back then in 2008. That means now, I am constantly pushing the boundaries of my remaining
abilities to speak against injustices. I want to achieve so much in a personal, social and academic sense and all I ask is to be given the opportunity
to do so.

It is probable that everyone will get an itch somewhere, sooner or later. And so, when you get an itch, you do what comes naturally: you scratch it! It
is a simple process that itches are made to feel better when scratched. Or so it seems.

But what if you can’t scratch? I mean, what if you can’t scratch where it itches because you have nothing to scratch it with? It may be an itch that is
underneath your plaster cast that is in place to help with the healing of your broken knee-cap. What if the itch can’t be localised? What then? It is not
such a simple problem.

I happen to know a lot about the problem of scratching itches from a rather unique perspective How? Because I have a neuro-transmitter dysfunction that
simply won’t allow me to reach wherever it itches. So I have learned to cope, to block out the irritation. I have to admit that it is, indeed, a luxury
when I am fortunate enough to have a very empathetic support worker who can help me by scratching my back or my ear, but I won’t bore you with all the
details of my relief because I have only raised this with another purpose in mind, a purpose I might add which might help our society understand the itches
people like myself have to deal with.

I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich’s Ataxia. I’ve been attacked by this progressive
disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene
and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need
for empathetic behaviour from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You’d have to say that my life, with the progression
of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled
people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools
and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant
society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched!

Yes, we need ramps and railings that lead into public buildings. But, there needs to be something more. Let me tell you that I have received much, for
which I am very grateful. And have come such a long way with so many people to thank. I often wonder, how can someone like me have got this far? And with
a disease that has made a greater impact over my body as time passes.

I am now 45 and my care needs increase almost by the day. Yet despite this I have just completed a study tour in Hawaii visiting the University of Hawaii,
Center for Disability Studies. My social enquiry in the US focused on how many people with severe disabilities yearn for, and are capable of performing,
most human activities – with assistance from a support worker.

I was diagnosed with Friedreich’s Ataxia at 14 and then my mother died of cancer when I was 18. I was well and truly on a downward emotional and physiological
spiral. By 23, I was confined permanently to a wheelchair. But it was also around this time, with the encouragement and perceptive advice from a close
lady friend which lifted me out of a fantasy land of self-pity, that I began studying for an Associate Diploma in Accountancy at Dandenong TAFE. That inclusive
and happy learning environment gave me inspiration to tackle life with vigour and it still serves as a reminder to me when, like anyone else, I develop
the usual emotional itches which need scratching. That was my 1984.

But that year, 1984, reminds us of something else doesn’t it? Since then, my life has been not unlike the problematic world that George Orwell describes.
It is especially relevant to people like myself who are really very grateful for all the special consideration, no matter how insignificant, equal opportunities
and affirmative action we have received over the years.

But why is it problematic? It is problematic in an Orwellian sense because we know that if we raise a voice in criticism, even if we are trying to be constructive,
we put ourselves in an exposed situation. After having traveled so far, with so much kind assistance, it can too easily sound like we can never be satisfied
and can never get enough freebies.

It’s as if after graduating with my PhD, and then in 2007 when I was presented with the Emerging Disability Leader of the Year award, I developed a new
itch, but just didn’t know where so it could be scratched. My PhD thesis, my academic journal articles and my On Line Opinion pieces were all being applauded
but, somehow, the major issue I was trying to discuss was being ignored.

I think public policy towards people with disabilities, and in particular severely disabled or progressively disabled, has ignored some important factors
to the detriment of our society.

First, I will sound like a broken record by offering my analysis over and over again; and second, our society cannot be, or become, the compassionate solidarity
it claims for itself if it doesn’t hear what I am trying to say. I have a sense of obligation here to speak out. It’s not just for me, although I am painfully
aware of its application to myself and to my own situation.

The point is this: for some of us the special consideration, equal opportunity and affirmative action, designed to get disabled people into the mainstream,
paradoxically brings us to a more exposed and needy situation. This cannot be addressed without more special consideration, further and ongoing application
of equal opportunities after training is completed and further affirmative action once we have obtained our qualifications. It is a simple point that can
be readily illustrated.

This illustration of policy dynamism is based on the approach I have identified as pragmatic social democracy, advocated by Hugh Stretton and Marta Russell,
in my Doctoral Dissertation.

Once a person with a severe disability at TAFE, for example, receives a diploma then society’s responsibility to that person is not somehow fulfilled,
because at that point the obligations have actually increased. The person may need special support to attend interviews, and when that person is offered
and accepts a position of employment it may be necessary for technical and other assistance.

I could repeat this point for each of the steps I have made through my own higher education: TAFE Diploma, Bachelor of Business, Bachelor of Arts, Master
of Arts, and Doctorate of Philosophy. There are other facets to keep in mind as well. Somehow we need to find a way to view and support people with a disability
in pro-active methods of equal opportunity; rather than focusing on the medical model’s view of a sympathetic approach: people with severe disabilities
need an empathetic approach, aligned to the social model. My assertion is that society’s responsibility increases in specific ways oriented to professional
commitment and involvement, once the student with a severe disability graduates.

But, as my own needs, and possibly those of others, have increased or are increasing, support is not only to be seen in educational terms. The dynamic
of increasing support reflected in policy should also seek to meet the increased needs which the policy at an earlier point has also helped to bring about.
There are also increased needs of those who support, as well as, the increasing needs of the person with a disability.

For a TAFE graduate like myself, I was faced with a daunting prospect. I had a wonderful Technical and Further Education experience, which affirmed me
as a mature-age student, and I was no different in some ways from any other TAFE graduate: “What next?” we asked. Leaving TAFE for all of us in that year
was a life changing experience, but life moves on.

Life moves on. That is the irony that is central to my attempt to point to the dynamic at work here. But the paradox is that not all of us, and not all
disabled people, have to deal with a progressive disease. To apply for a job in an accountancy firm after my graduation from Technical and Further Education
would have been to ask the prospective employer to initiate a general policy change that we, as a society, were only just beginning to think about let
alone implement.

The political consideration of equal opportunity and affirmative action was still at an early stage. So, as I look back on it now, it is no wonder that
I was attracted to the higher education field which proved to be more advanced, and hence more hospitable to me with my particular needs, than most other
areas.

I am the beneficiary of higher education which has been required to make room for disabled people. But then, it seems that higher education was also being
re-oriented to make it compatible with job training for a post-industrial society. In such an environment, as Marta Russell has pointed out, a university
degree becomes the evidence that society has met its obligations to help disabled people compete. Equal opportunity was not always matched with appropriate
affirmative action.

In this respect I would suggest that affirmative action needs to be taken to a new level. And perhaps this new level cannot be reached without recognising
the ongoing obligation which a degree-granting institution has to its graduates. Understanding mutual obligation from the institution to its highly qualified
graduates is downplayed if not lost entirely.

In my own case, a university which takes a qualified post-graduate student with Friedrich’s Ataxia into its PhD programs, should not view itself as giving
a sympathetic expression according to the medical model’s agenda, which has the unfortunate ability of systematising disability policy pursuits. Although
that is, I am sorry to say, the predominant way in which Australian higher education under third way and neo-liberal policies tends to view such achievements.

That’s the itch I have wanted to scratch. We need universities that will recognise that their institutional mutual obligation is not transacted merely
by granting degrees and then every year thereafter sending out brochures inviting its highly qualified alumni to give generously to the university’s noble
cause.

In my case I am forced to ask: How is it that the university has not required me to give back by post-doctoral research and to be part of its ongoing research
effort? How is it that it can take on a candidate without expecting to maintain its responsibility to provide ongoing support after graduation, and also,
in order that its own research work is enhanced by my contribution?

Note, my point is not to ask that my work be judged before I do it. I am referring here to the lack of effort or empathy that seems to come from the side
of those administrating higher education institutions in Australia.

Writing On Line Opinion pieces, or developing my own Blogspot, are indeed satisfying experiences and I would not want them to be taken away. But such personal
satisfaction at getting a paper published is not the main game. What I am concerned about is the development of genuine policy for the severely disabled,
and in particular, policies that will seek to meet needs that arise from progressive disability.

I have always done what is needed to be done, and I only wish to keep bringing to light the individualism of people with disabilities.

PETER BOOK POSTER FINAL

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

The dream of saving the disabled Kenyans Author Mugambi Paul.

We’ve come a long way, with disabled Kenyans having more opportunity than ever, but there’s still a long way to go.
Since 1992, the International Day of Persons with Disabilities (IDPD) has been annually observed on 3 December around the world. The theme for this 2019
IDPD is ‘
Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’. The theme focuses on the
empowerment of persons with disabilities for inclusive, equitable and sustainable development as envisaged in the 2030 Agenda for Sustainable Development,
which pledges to ‘leave no one behind’ and recognizes disability as a cross-cutting issues, to be considered in the implementation of its 17 Sustainable
Development Goals.

My hope is that Kenya will reach a point where basic education about acceptance and inclusion is no longer imperative.

I hope we’ll reach a point where it’s commonly understood that people with disability have the same rights to independence, employment, respect and access
to facilities as everyone else.
And I believe finding jobs for the thousands of Kenyans with disability who dearly want work is an essential part of getting there.
As a public policy scholar, I observe, it’s difficult for a blind person to land a job, even with stellar qualifications. A blind person with an associate degree is statistically less likely
to be employed than a sighted high school dropout.

Often, employers who don’t have experience working with disabled persons can’t conceptualize
how a disabled candidate can perform the job’s duties.
It makes matters worse employers who have experienced working with disabled persons are the barriers of enabling the Kenyan disabled to be employed.
As Helen Keller once said, “The chief handicap of the blind is not blindness, but the attitude of
seeing people toward them.”
These ungrounded fears contribute to the persistently low employment rates for disabled people.
Statistically as research shows at list in a population of 10 disabled Kenyans 8 are not employed.

To shift attitudes and make a difference — more people with disability need to be supported in the workplace.
I opine that most employers do not know that disabled people aren’t in the workforce, meaning employers are missing out on the benefits of hiring people with disabilities, including improvements in profitability,
competitive advantage and innovation.

Moreover, I grew up in a rural set up. where my community never bought into who I was — and made my world not as accessible as they possibly could. I had a great struggle to accomplish my educational journey,
where I faced discrimination and not treated as a peer. I believe right now,
There are many people with disability hoping to engage in work and the community more broadly and receive the opportunities that I was given so naturally.

They deserve the opportunity to be employed and fulfil their potential as much as anyone else in the African community.

I know what I most want to achieve as I celebrated my 22nd Birthday of being Blind.
Secondly my dream is
What I most want is for the community to use IDPwD as a launching pad for further action.

At this year’s celebration I hope governments, individuals and organizations will take the opportunity to commit to one concrete action towards removing barriers to accessibility
and inclusion for disabled Kenyans.
This is not too much to ask!
Get your workplace to give a person with disability a job.

Look for ways you can make your organisation, building or website more accessible for people with disability.

Create a paid internship program to help people with a disability get the skills they need to find a permanent job.

Provide anti-discrimination and bullying training to your staff — particularly those in customer facing roles.

If I can convince one person to roll up their sleeves and create a job for a person with disability or improve accessibility and inclusion within the community
— I’ll be satisfied with my contribution as a public scholar and expert in diversity and inclusion.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy and diversity and inclusion expert.

Why the Blind in Kenya were duped on money identification! Author Mugambi Paul

Before reading any further, close your eyes, reach into your purse or wallet and fish out 1,000 Kenyan notes.
What comes in your mind?
Can’t do it? You now know what currency discrimination feels like.

Currently, over one million blind and vision impaired Kenyans depend on someone else — a family member, friend, cashier or bank teller — to identify the
denomination of each notes for them before they can organize their money to spend themselves.
How many Blind and vision impaired persons have been duped?
The latest statistics even includes the Daughter of the head of Africa infrastructure Rose Odinga.
Furthermore, central bank of Kenya had great aspirations, but they were also duped.
To put matters into perspective the real Blind and vision impaired persons were not engaged.
Thus, lack of public participation.
who is the disability rep on the central bank of Kenya board?

I observe that, there are sighted teachers who have served in Blind schools for more than 2 decades and they don’t know braille or interest in adaptive technology.
Additionally, there are persons working in the disability sector and they don’t know what reasonable accommodation nor universal design is! This is the root course of current acceptance of mediocre leadership in the Kenyan disability sector at large.
This is also coupled with the charity-based model where the disabled person is offered a token to justify the service.
I affirm that due to this most public and private sector will claim they don’t have the capacity while they have not granted the disabled a chance.
Casing point is the employment opportunities
.
No wonder even the Blind and vision impaired persons are the most highly discriminated in job advertisement.
For example the Kenya national youth service, police and army.
Why does the Kenya society underestimate Us?
Did the Kenyan blind and vision impaired Peak bodies speak out?
Did the any human rights body speak out?
The jury is outside.

During the Madaraka 2019 what the Blind and the vision impaired persons were meant to celebrate the newfound love of government commitment to accessibility as per the constitution
2010 and the UNCRPD on matters universal design was not achieved.
Although we got a token of the cash notes having different colours.

I know some of you will justify that we the “Blind and vision impaired” should accept the token.
This is not going to happen.
I foresee the Blind and vision impaired persons arising and demanding for better access of the money identification.
The small bit done for different notes on colour is highly appreciated.
The Central bank of Kenya should realize the advantage of accessible cash it’s not for the blind only, but it will assist the highly tech young persons, veterans and those facing eye problems.
As public scholar and my passion for advocacy I have evidently seen how the engagement of persons of concerns makes policy implementation easier.
Its now upon the central bank of Kenya and the blind sector to ensure we have accessible notes through consultations.
Can the real Blind and vision impaired persons stand up?
The central bank of Kenya needs to include a disability research component in its works.
Will the 2 Kenyan sleeping giants in the blindness sector arise and stand to be counted?

All in all, I opine, the blindness and vision impaired system in Kenya doesn’t just need to be ‘reformed’. It needs to be broken down, dissected, & re-built from the ground, up.
This will happen when the Kenyan Blind and vision impaired persons unite and have a common voice!

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy and diversity and inclusion expert.