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.

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.

What James Macharia and the building industry need to know about housing for all Author Mugambi Paul

What James Macharia
and the building industry need to know about housing for all

When CS of transport and infrastructure James Macharia grabbed headlines, last week claiming to implement the 1.5 % housing levy. Several questions came to my mind as a public policy expert on diversity and inclusion.
Will the housing plans be accessible, how many persons with disabilities will benefit from the scheme? No regulations regarding accessible housing have been put across.

, it showed a clear lack of awareness about the situation facing people who need accessible housing.
A quick and random call among persons with disabilities soon clarified that accessible housing is a rare commodity in Kenya.
Housing finance and real estates in Kenya have not taken any concrete measure to ensure even at list wheelchair accessible houses.
A negligible
Number of persons with disabilities have modified and customise an existing home if they need accessibility features.
Homes in the area are often high-set, or have stairs to the entries, or might have a feature like a sunken lounge.
I opine that It’s all about the space inside, and whether it is possible to navigate it easily.
When policy implementors put in mind the accessible needs, they aren’t doing for persons with disabilities but it’s for all. this is because the accessibility features will help in future. policy implementors need to plan for mobility-friendly home for
present and future occurrences. Some suggestions include:

As well as a level path to the entry, step-free entry and wide doorway, they look for features like a place under cover outside or inside near the front door to park and charge an electric mobility scooter. This is also not always easy to find in homes on the market.
Sadly, the situation in Dickson is not abnormal
But Nairobi is not unusual in having a dearth of dwellings suitable for those with accessibility requirements such as disability, age-related health issues, being on crutches following injury or grappling with infernal contraptions for conveying small children in and out of their property.
Nairobi is typical – and that is a major problem.
There are some moves afoot to change the way new homes are built – and more on that shortly – because the bottom line is that more inclusive and user-friendly housing that incorporates basic universal design would ensure homes work for just about anyone.
For people with disability, the lack of dwellings that meet basic Livable Housing Design Guidelines can compromise full participation in both economic and social life.
Importantly, the Kenyan disability sector has been silent on this critical concern. Notability, housing it’s one of the big 4 agenda by the president.
This shows how the disability stakeholders have not engaged sufficiency with the government and the building stakeholders.
There is lack of existing data on accessible housing and also ownership of homes by persons with disabilities.
Moreover, there are no guidelines or regulations on accessible housing nor available information on the current Kenya disability strategy.
The challenge is to policy makers to rise to the occasion and guarantee basic and accessible housing for all.
Additionally, there are specific difficulties and barriers created by the lack of affordable and appropriate housing near employment.
A lack of affordable, accessible housing directly affects employment opportunities including where a person can work, hours that they can work, access to training and promotion as well as all the social activities that come with being part of a workplace.
According to the United Nations, over three quarters of Africa’s population is under 35. Kenyan youth is over 20 per cent of the population — higher than
the world (15.8 per cent) and Africa (19.2 per cent) averages.

Kenya has the highest youth unemployment rate in East Africa. Youth inclusion into construction is imperative not only to employment security, but also to curb
the increasing social spiral into crime that unproductive and disenfranchised youth are vulnerable to.
It is prudent for policy makers and stakeholders realize that People with disability, like everyone else, need to have easy access and proximity to their places of employment.
“This includes ensuring there are strong and well-planned links between accessible housing, accessible public transport and an accessible built environment such as footpaths, premises and availability of accessible facilities such as toilets.
This is a challenge to the legislatures in both national and county governments to take the bull by its horn and ensure accessible housing policies are being developed and executed.
There are even barriers to engaging with the property market.
“Where employed or not, whether housing is being sought for purchase or in the private rental market, people with disability face numerous barriers to have our housing needs met.
“It is extremely difficult to find rental properties that are both accessible and affordable.” A blind client
Informed us. The county governments need to zero rate taxes for persons with disabilities in order to uptake ownership of property and building houses.

This is because It is also difficult to access funding and/or approval to make the necessary modifications to rental properties.
“The appalling experience by the Blind client is sadly a common experience for many people with disability.
“Many of us face difficulties in finding accessible housing in close proximity to our work and we often face highly restricted choices in where we can live. The experience also highlights the poor attitudes and a lack of understanding that still exists within the community as we navigate and negotiate our way around a largely inaccessible environment.”
How far off is industry on delivering accessible housing for all?
This is still a pipedream to attain the 500.000 houses by 2022.
I believe if the government and policy makers can have a consensus from government, property developers, and advocates for older people and people with disability for basic access features to be rolled out in all new homes by 2025.
We are likely we will get there.
The basic design features for minimum universal design features such as a level point of entry to the dwelling; step-free showers that allow for seated use and toilets in a ground floor bathroom with room to manoeuvre; wider doorways and corridor widths should have a focus of establishing a Kenyan Building Codes Board.
The board should pursue research and endeavour to produce quarterly reports on accessible housing for all.
While wheelchair users as a specific group of people with disability are a small proportion of the population, I affirm that the accessibility features are also important for people to age in place.
Social housing is not the answer for all people with disability, as there are those who have well-paid jobs. Parliamentarians with disabilities, for example, are often in full-time employment and earning incomes that allow them full independence. There are also many livings with other family members in a family home
All in all, the house building industry has not “come to the party” of its own volition on delivering universal design features as a standard product.
Hence the need for changes to the construction code to make it happen.
Real estate is generally resistant
Private Real estate are reluctant to include access features even when asked.
“If you engage an architect for a custom build then yes, you can get level access to the alfresco,” she says.
The reality is accessible housing ready to move into simply isn’t easy to find – and even when a home is accessible, there is no easy way for buyers to identify those properties.
I also take note that Many builders also see providing disability-friendly housing as a Kenyan government responsibility.
There are also an attitude older people should be moving into specifically back to the rural places not expecting the mass market to cater for their changing needs.
However, with the statistics showing that around 35 per cent of households include a person with a disability, this is a mass market need.
“That’s a big chunk of the population.”
The lack of accessible housing also impacts who can visit a dwelling. many people “just put up with it” when they realise a family member or friend cannot visit their home due to an un-navigable entry or internal features.
The lack of interest in delivering accessible housing also means there are few putting thought into design for accessibility.
Good design doesn’t mean there will be “ugly” grab bars everywhere as many people think.
“It doesn’t need to look like a person with a disability lives there.”
The reluctance to make accessible design a basic and universal part of dwellings is not an outrageous demand on the industry.
I observe that We already have so many universal features such as walls, roof and windows.
It is not a stretch from these types of universal features to making accessibility standard so that more homes are useable by more people across their lifespan.
“It’s not rocket science. [These features] are already included in many high-class homes in Kenyan surbabs. technical problems have already been overcome.”
As to the argument the accessibility features will cost more – which was a feature of the builders–Any added cost is due to the need for subtrades to change the standard practices, and in going back and undertaking re-work where they have done things in the usual “cookie cutter” fashion and failed to deliver specified universal design features.
I call it the “hump cost” – the initial adjustment required to get the industry onboard with doing things slightly differently.
Ultimately, accessibility in housing is just about “thoughtful design and useability for the maximum number of people.
The views expressed here are for the author and do not represent any agency or 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.

organization.
Mugambi Paul is a public policy and diversity and inclusion expert.