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Rolling Rains Leaders Interview:

Esther Greenhouse Environmental Gerontologist

Interview by Monica Guy

A powerful advocate of inclusive design and an expert on issues around aging in place, Esther Greenhouse was acknowledged for her efforts in January 2009 with the prestigious Certified Aging in Place Specialist (CAPS) of the Year award. An experienced speaker and articulate writer, here she explains CAPS, her own work in gerontology and training, and her visions for the future:

How did the CAPS program come about?

In 2000, the US non-profit organisation AARP (American Association of Retired Persons) conducted a study entitled 'Fixing to Stay", in which 83% of respondents aged 45 and older reported that they wanted to remain in their own homes until the end of life. AARP then approached the National Association of Home Builders (NAHB) and together they developed the Certified Aging in Place Specialist (CAPS) program.

Has the CAPS program made any impact? Has awareness increased, have attitudes changed?

Recently, I was cleaning out my professional library, and found publications by AARP and other groups delineating the needs for and explaining the details of aging in place and housing needs for seniors. These documents were 20-25 years old. Why is this relevant?  Because while both experts and society have known about the huge growth of the aging population for the last 30-60 years, we have all been slow to act.

There has however, been a significant shift towards addressing issues around the ageing population in the last 5-10 years. Why? In part because we can no longer ignore them, but also due to increased awareness and training via the CAPS program. The professionals have the awareness and training to address the needs of the consumers, and now have the resources in knowledgeable professionals.

How did you get involved?

Nearly 20 years ago I was the first Interior Design student in my college to pursue the then-new Gerontology program. Conducting a semester-long review of housing options for seniors, I came to the conclusion that aging in place was the ideal. I then committed to making this a reality for many via my professional work.

My husband is a builder, and very active in the builder's association. Through him, I learned about the CAPS program. I pursued the designation, and then realized that here was a powerful means of achieving my goal. Teaching CAPS is extremely rewarding - I have the opportunity to raise awareness, inform, and inspire 10-15 professionals during each two-day session. I know that each one in turn will then go out and help dozens to perhaps hundreds of people throughout their career. Plus, those accessible homes will be around to enable people to live independently for generations.

In August, I will begin a PhD program in which I will focus on funding options for accessible home modifications. I intend to analyze the existing government programs, and then make recommendations for revisions, or develop a new model or program. There will also be a sustainability component to my work.

What do you do on a day-to-day basis, and how does this fit into the bigger picture?

My work varies daily, which I really enjoy. Several times a year, I teach the CAPS classes. Other than that, I work to build relationships with non-profit organizations like Independent Living Centers (www.ilusa.com/links/ilcenters.htm). I send frequent emails to my former CAPS students, to make them aware of new issues and articles. I also try to help them form relationships with each other: for example, by introducing an occupational therapist to a remodeler in the same region, or two designers who are miles apart but may serve as sounding boards for one another. I speak at seminars and conferences as well.

I also have a young child who comes first, as much as possible, so I try to build my work schedule around him.

Recently, I was invited to join a new group at Cornell focusing on the intersection of an aging society and environmental problems. I am thrilled to have the opportunity to be at the forefront of this work, and to collaborate with a wide range of researchers to address these issues. Spending the afternoon brainstorming about the direction to go in, hearing about issues which are new to me, knowing that this is the first step in making a difference, these are meaningful ways to spend my time.

How do you see yourself? A researcher, a campaigner, a business woman?

Recently, the National Association of Home Builders published an article about me on their website, in which they called me a 'business woman'. In my case, I am not a business woman. I consider myself an advocate and educator. Much of the work I do is pro-bono.

I had a two-year research appointment which ended this past October (the grant ended). Shortly beforehand, my husband asked, "What will you do next?" I explained that my gut was telling me to focus on advocacy, and ideally, enough paid teaching opportunities would come along to enable that. So far they have.

Originally I trained as an interior designer. I think it is important for CAPS professionals to come from a wide variety of backgrounds, the more multidisciplinary the better. One hallmark of the CAPS curriculum is the emphasis on having a multidisciplinary team of professionals working together to address the aging in place needs. When you have an OT and remodeler work together, you are more likely to a successful, enabling environment. This is one of the hallmarks of the CAPS curriculum.

Do you find that society's attitudes to people with disabilities are changing now that the population is ageing?


I have always been a gerontologist, but since becoming a CAPS instructor I have been thrilled to find that the needs of people with disabilities are now coming into the mainstream, along with the renewed attention on accessible homes for seniors. More and more, the lines between age-related disabilities and non age-related disabilities are blurring. I feel that this is the next big wave in our society - a new level of awareness and understanding for persons of various abilities and needs. It has been growing for decades, but there is a significant shift now.

Disabled Iraqi veterans are changing society's views as well, in terms of not simply accepting what they can no longer do, and relegating them to a life of limited opportunity. Many veterans are showing us that their abilities have changed, but that they can still lead rewarding lives if we don't stand in their way. People over 50 have been doing that too, for the past 20-30 years. Today's definition and concept of what it means to be "old" has changed dramatically in my lifetime.

I wish I could say that all of the shift we are having and will have is due to increased awareness and demand. But actually two of the biggest factors driving the change are legislation and litigation. Determined advocacy groups like Concrete Change and others are working very hard on two fronts: firstly, to promote 'Visitability' and to have Visitability ordinances passed; and secondly, to sue developers and landlords of multi-family housing who are in violation of the Fair Housing Act.


How do you see the situation for seniors and people with disabilities 50 years from now?

Terrific! These issues are the next big wave which our society will address. I see a society where we have embraced abilities and disabilities as a continuum, rather than as distinct, restricted groups.

Do other countries have similar projects? If not, should they? How do you recommend they should go about setting them up?

Absolutely! When I co-presented our seminar 'Green Building and Aging in Place: Building Homes to Meet the Needs of the 21st Century' at the International Builders Show, I was later contacted by Jean-Christophe Vanderhagen, Director General of the Confederation of Construction. Mr. Vanderhagen also serves as Chairman of the European Committee of the International Association of Homes and Services for the Ageing (www.iahsa.net).

What advice can you give to older people who want to remain at home until end of life, but don't know how to go about making the necessary adaptations?

First and foremost understand that the design of your home is the issue, not you. If you move to a lovely senior community, or assisted living, it will only enable you to thrive if it is properly designed.

If you live in the US, go to the following page on AARP's website and search for a CAPS professional in your region who can work with you to modify your home: www.aarp.org/family/housing/articles/caps.html

Tell us about your work assisting the city of Ithaca in its bid for the Accessible America award

I have only been able to have limited involvement due to scheduling conflicts. My assistance to them has been very minimal. However, it has served to further raise my awareness of the obstacles faced by persons with disabilities, and drives home the point that aging in place is a complex societal goal, which encompasses home design, transportation services, medical services, sidewalks, snow removal, among many others.

In conclusion...anything else you want to tell the world about?

Yes!  Do not underestimate the power of the built environment to enable, or disable, to uplift, or depress, to limit you, or to help you thrive!  

Think of the great cathedrals of Europe - wonderful examples of how the built environment can make you feel: small in the presence of the Almighty, uplifted by the soaring spaces, enraptured by the exquisite artwork. Through the proper design of the built environment, we can actually delay or prevent institutionalization for millions of people.

How can we not address this? This concept is nothing new, but that does not make it any less important.


Further Reading:

AARP study: http://www.aarp.org/research/reference/publicopinions/aresearch-import-783.html

CAPS web page:
http://www.nahb.org/generic.aspx?genericContentID=9334


About Monica Guy:
http://www.monicaguy.co.uk/


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Ari Seirlis: Former National Director of the QuadPara Association of South Africa/ Parliamentary Candidate for the Independent Democrats

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Loved by some, feared by others, appreciated by many, Ari Seirlis is a stalwart of the disability community of South Africa and a thorn in the side of those who disregard the rights of people with disabilities.

 

A dynamic man and tireless worker with strong passions and a penchant for publicity, Ari has recently resigned from his six-year tenure as National Director of the QuadPara Association of South Africa (QASA) in order to pursue a political career with the Independent Democrats. As number three on the minority party's national list, he hopes that South Africa's general elections on 22 April will sweep him into a seat in Parliament.

 

With a background in business and many years of experience under his belt, Ari is far from being your average guy in a wheelchair. Renowned for his bold statements and even more audacious public campaigns and protests, he is arguably South Africa's most well-known - and notorious - personality in the disability community.

 

From his office in Durban, Ari gives us a glimpse of what lies beyond.

 

You're spent the last six years lobbying, criticising, and cajoling politicians about disability issues. Now you're joining them. What do you think you'll achieve from within Parliament that you couldn't achieve from the outside?


I would like to establish relationships and partnerships with people who are representing disability in the ruling party, which will almost certainly be the ANC, and in other political parties. Through these relationships I will try to influence both strategy and implementation and encourage performance.

 

I do think that over the last few years the government has had no pressure from an opposition party to do very much at all for people with disabilities. In fact, apart from the ANC, there are no members with disabilities in the minority parties! Furthermore, people who represent disabilities in the ANC are in a very difficult position to challenge their own party and ministries on the delivery of services and rights.

 

It will surely take some time to understand the avenues and the various committee functions and the way things are done in Parliament, but I'm convinced this is the way I can get even more done for the people with disabilities of South Africa. 

 

How much clout will you have as a member of a minority party? How will you approach your job as an MP, assuming all goes well on election day?


That is something which has to be tested. I do believe that the Independent Democrats leader Patricia de Lille has a lot of respect in the political arena, more than any other leader of any other political party. She is known to be a woman of courage and conviction.

 

My approach will be to try and establish as many relationships and partnerships as possible. On my own, I would be helpless. I'll be "selling" disability issues and the benefit of them as well as challenging other political parties on their stand.

 

I also want to test the value and strength of the Equality Court on a number of issues.

 

What are your priorities? What advances would you like to see in the field of disability rights in the next few years?


One major issue for people with disabilities is accessible transport, so that will be one of my first priorities. I will be closely monitoring the progress of the bus rapid transit programme, which is gradually being implemented - it must be made accessible to all.

 

Apart from accessible transport, I will be focusing on national building regulations and pushing for some major changes to reflect universal design policies.

 

Education, too: I would like to see the integrated schooling programme work so that children with disabilities can receive the same education as ordinary South Africans and be integrated in the same environment.

 

And, of course, money. The disability grant given to quadriplegic and paraplegic people in South Africa is disgracefully low and the way in which it is distributed is in desperate need of refining.

 

And there are so many other issues of which I still need to understand and prioritize.

 

Let's talk about your achievements so far. What are you most proud of?


I am very proud of the fact that we, at QASA, have invested so much effort in prevention. We don't only support people who are already disabled, we try to prevent the accidents which lead to severe disability. One of our most high-profile campaign slogans is: "Buckle Up: We Don't Want New Members" - a catchy slogan that most people in South Africa have now heard. We also released a series of TV advertisements highlighting the dangers of diving into the sea as a cause of spinal cord injury. They stick in the mind....

 

Rolling Inspiration, our in-house magazine, is another one of our most ambitious and successful projects. It is the only disability lifestyle magazine in South Africa and contains a host of useful and fun information. The magazine will soon be relocating all of its travel tips and sports articles to a public file on the website, so that travellers with disabilities from all over the world can access them.

 

Our BAGS OF HOPE project involves giving everyone who leaves hospital with paraplegia or quadriplegia a kind of "goody bag", with information, advice, a few free goodies. A survey form in the same bag allows us to understand our membership as it grows, and ensures that we have the most comprehensive database in the country of people with spinal cord injuries.

 

We also support our members in their bid to find gainful employment. I am very proud of the fact that we will be opening our own Pick 'n Pay Family store this year, which will be run by a quadriplegic who has just completed 2 years at the Pick n Pay College.

We have developed two Computer Digital Villages, a Call Centre, Mobile Telephone businesses for our members, completed 3 learnerships for our members and probably most significant, we own our own rehabilitation Centre in Port Elizabeth.  Many of these ventures are run by QASA members. This will help to sustain QASA for many years and allow the organisation to offer more and more valuable support to members in the field of employment. For example, we now offer IT training courses and have just supported eight of our members in their bid to start phone operator businesses with Vodacom. 

 

How has your diploma in marketing and your business experience helped your work at QASA?


Certainly, having a marketing background has been very good for QASA. The brand is prominent, the organisation is well known, and people now understand and acknowledge the acronym. Having some business experience has definitely influenced the strategy that I took regarding the sustainability of the organisation.

There is no reason why a charity has to remain on their hands and knees begging for handouts, I looked at a business model and it has worked for us.

 

This has also been acknowledged by the corporate sector who support us. Vodacom, Pick 'n Pay, Coloplast, Alexander Forbes, SAB and many others have supported our projects over the years.

 

You often go beyond simple campaigns and projects, though. At a recent protest outside the office of the Institute of Architects, you and your fellow demonstrators burnt wheelchair tyres in protest against the office's lack of accessibility. Why do you choose to use such militant tactics?


These type of tactics are not uncommon in our country. They attract the attention of the media, they show that we are resilient and serious about what we mean and say, and at the end of the day we generally get results.

 

It is a long time since people with disabilities have taken to the streets in anger about a dispute that is transgressing human rights. Often, people with disabilities are just sidelined. In this case, we registered the protest before going ahead, we advised the media, we chose specifically to burn wheelchair tyres, and we delivered a memorandum to the President of the Institute.  It worked!

 

Do your attention-grabbing tactics work? Do you get the attention you deserve?


 Of course the tactics worked. Architects in particular can either be our greatest ally or our worst enemy. In this particular case, the fact that their offices were inaccessible - steps up to the entrance, no wheelchair accessible toilet - was an absolute insult, and furthermore made a joke of their integrity. I don't think they ever believed that we would come to protest en masse to their offices.

 

Our trump card was not in fact the protest on the day, but the fact that we wrote to the International Union of Architects, requesting them to consider taking away the world conference from Durban in 2014 unless they made to the premises accessible. This particular correspondence was very effective.

 

You're renowned for being a man of action, always working, always on the go. What drives you? Has your work changed you?


I have often thought about this, I am probably a little bit obsessive about my work, and I wish I could slow down a little bit. I am driven by the fact that people with disabilities have got a bad deal here in South Africa. I am one of the lucky ones, who got a good education, and have the capacity to make a difference.

 

Certainly, after my accident, my life has taken a new turn. I have got to understand the value of human development over and above anything else.

 

What do you do to wind down?


 I enjoy a little bit of reading, I do a lot of thinking whilst fly-fishing, I have a lot of fun in the bush riding my quad bike, I get a lot of exercise using my hand-cycle, and I generally do a lot of laughing around the braai [barbecue].

 

What advice would you give people with disabilities in South Africa?


 Fight for your rights: they exist, we just need to ensure that we live them. Let us use all the legislation we have to ensure that our lives benefit from this.

 

And in conclusion... Anything else you would like to tell the world about?


I am very proud about the fact that disability is on the agenda in this country. Thank you to those who made sure of this. I am committed to developing relationships, to listening well, to responding even better, to working hard, negotiating, consulting........ all in the interests of improving the lives of persons with disabilities in South Africa.


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This interview was done by travel writer Monica Guy

 

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An Interview with Javed Abidi, Director of India's National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.)

Interview by Monica Guy

Dynamic, passionate and tireless in his work, Javed has rocket-launched the issue of disability rights in India from almost a standing start in the early 1990s. As director of India's National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.), among many other responsibilities, he and his small team of eight have created an vast network of contacts, supporters and associates the world over.

Javed's achievements in the past 16 years have been both ground-breaking and mind-boggling. Among many other things, he was at the forefront of a campaign which resulted in a landmark law recognising the rights of India's disabled population - approximately 70 million people. In 2007, he led a campaign which achieved - for the first time ever - significant recognition of disabled people in the government's official five-year plan.

From his office in New Delhi, he spills a few secrets:


When you first turned your focus from journalism to disability rights in India, back in 1992, the picture was depressing. Less than 2 percent of disabled children were in education, less than 1 percent of disabled adults were employed, and open discrimination was rife. How optimistic are you now?

Paradigm shifts have taken place in the last 10 to 15 years. The situation for disabled people in India has improved enormously. I'm very optimistic that the future will follow that trend. If we talk about the glass being half full or half empty, I like to see the glass as half full.

However, it's vital not to get too complacent. We shouldn't feel we have achieved everything, as when I consider India's size, its population, its dynamic quality, I see there is still a very, very, very long road ahead.

Sometimes it is important to see the glass as half empty.

How has Indian society changed in the last 16 years, in terms of how it treats people with disabilities?

A change in society's perception of disabled people is vital for disability rights, so this is an important question. Politicians, journalists, policy-makers, are not separate from society but immersed in it and influenced by it.

In the 1990s it was almost a curse and a shame to be disabled. People with disabilities were unseen and unheard. In that time, whenever I went out shopping or to the cinema people would stare at me or ask me what had happened - out of simple curiosity rather than malice as a disabled person in public was a rare sight.

Now, nobody gives me a second glance. There are far more disabled people out shopping, in the park, at the cinema. This helps raise awareness among the general public, and also gives confidence and reassurance to the disabled people themselves. The fact that there is now a law to protect the rights of disabled people also helps.

However, there is a great difference between India's large, cosmopolitan cities, where disability is generally accepted, and the rural towns and villages, where it is still rather a taboo issue.

Your headline-grabbing campaign methods do indeed seem to focus on spreading information and raising awareness in society. Are they effective?

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One of India's greatest strengths is that it is a true democracy. Non-violent resistance, in the style of Mahatma Gandhi, is part of our history and our tradition. We decided to employ the same tactics to promote our movement.

We compile detailed information, write letters, negotiate, and if that doesn't work we are prepared to engage in dharna (sit-ins) and hunger strikes when the issue is important enough.

I have been on hunger strike several times for justified reasons. Each time this has touched a chord with the people and we have achieved what we wanted to achieve. For instance, I went on hunger strike just before the 2004 general elections, as part of a campaign to make polling booths accessible. The Chief Justice of India stepped in and ordered ramps to be made mandatory. We now have electronic voting machines with Braille, suitable for blind voters.

Have you always been so passionate about your beliefs, such a fighter?

Genetics plays a part: my father was a great fighter. He engaged in non-violent resistance and suffered hunger strikes of 20-30 days at a time. He was incredibly strong - my longest strike was for three days, and that was long enough.

I was also lucky that I could make friends with my disability in a nice, slow way. I knew from day one that I had a Spina Bifida so there were no sudden surprises. When I was eight my legs started dragging. I progressed to crutches and then to a wheelchair at 15. It gave me time to adjust and I have not suffered from lack of confidence or embarrassment about my disability.

And I don't give up. I don't believe in giving up. That's something deep inside me. When I was born, the doctors gave me just 20 days to live. My parents named me Javed, which means 'Immortal', and it must have worked because I'm still around.

I like to compare myself to one of those 'jokers', those puppets that you can keep on punching and punching, and they keep coming back. I saw one of them while in rehab in the US after major surgery and it affected me deeply. Now when I look back at my life, I recall that.

Don't you ever have to let go of some battles in order to concentrate on others?

In theory, yes. We do have to make some trade-offs. Every week we receive hundreds of letters and calls asking us to look at particular issues, fight certain campaigns, research this, that or the other. We have to be selective and focus on the most important issues.

On the other hand, I don't like to let go of battles. If you choose your target carefully to begin with, if you think it through thoroughly, make sure all your core values are in place, and go into battle well-prepared, then there's no question of giving up.

What are your latest battles in the disability world?

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We had a very successful 2007. Firstly we were at the forefront of the campaign that achieved India's official ratification of the UNCRPD, the United Nations Convention on the Rights of Persons with Disabilities. We were only the seventh country in the world to do this so we are extremely proud.

Secondly, we managed to make an impact in India's five-year government plan. For fifty years, the government has released official five-year plans for the country that make absolutely no mention of disability. After a strenuous campaign starting in early 2007, we achieved the historic victory of a significant chapter in this plan.

All ministries are now obliged to create a disability plan and allocated 3 percent of their resources to this area. At long last, disability is no longer simply dismissed as a minor part of the social justice programme, but is being treated with the seriousness it deserves. There are other commitments, involving things like physical access to buildings and transport, access to websites for the blind, the need for a sign language institute... it's all in there.

Unfortunately, 2008 was by and large a wash-out in terms of the government implementing these wonderful things it had promised. It was frustrating, but we bided our time and launched a campaign for implementation at the end of 2008.

On 3 December 2008, World Disability Day, over 10,000 disabled people braved the cold and flocked to New Delhi to protest in front of the India Gate. It shows the spirit of the movement - very much alive and strong. We were so many, and so determined, that we could not be ignored. The Prime Minister's Office responded and accepted ten major recommendations from us.

We are now working aggressively on our campaign for the government to implement its promises. I expect that we shall spend the entire year browbeating them, but we won't give up. We have to remember that these are huge paradigm shifts that will make real changes in the lives of ordinary people. We have to keep the focus straight.

What advice would you give to people in other countries who are trying, like you, to raise the issues around disability rights?

The principles are the same the world over. Networking, communication, rising above yourself to see the bigger picture - all of these things are vital. Focus on the stakeholders, those people who are involved in disability issues whether they like it or not. Take the media along with you.

It's very important to keep yourself free and uncompromised. Some NGOs are more concerned about their funding and their own inner organisation than about the issue they are supposedly fighting for. We don't take a penny from the government so our voice is free, unbiased and unshackled by obligations.

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A cross-disability movement is vital. In many countries people fight solely for themselves - the blind for the blind, the deaf for the deaf and so on. Some organisations promoting access for mobility impaired people have websites that are inaccessible to blind users. On the other hand, I've visited leading blind organisations that have no access for wheelchair users. But this will never work. You can't preach without practising what you preach; you can't tell society to be sensitive when you are being insensitive yourself.

Disabled people are a weak force the world over. Making divisions in our community makes us even more weak. We need to band together with a cross-disability movement that gives us greater strength and visibility. Then everything will fit into place.

What advice would you give disabled travellers visiting India?

Be realistic and do proper research before you come, especially if you have a severe disability. Awareness is growing in the tourism sector as elsewhere. Even if we have a long way to go in terms of disabled access, India is still a fun place to visit.

This is also a hospitable country and you can count on local people for help and advice. If you reach the Taj Mahal and there are seven steps, just ask those around you for a hand and you'll find they are more than willing. They help out of empathy, compassion and goodness rather than pity but are often curious, so don't take it the wrong way if you are stared at.

And in conclusion...

Disability rights is not just about disabled people - it's about wider society. Everyone must realise that disabled people are a strong component of world citizenship, in terms of the economy as well as in terms of equality, human rights, and the other values any civilised society holds dear. By shutting out disabled people from society, the world would be losing out.

It's equally important for those with disabilities to look within themselves and then reach out to others. It's easy to blame society when times are difficult. But what's the point of that? Throughout my entire life, as a student, as a traveller, as a wheelchair user, as a journalist, as an activist, I've learned that if you reach out and extend your hands, 5, 6, 10 people will join hands with you and you will be able to move forward.

Online Resources:

National Centre for Promotion of Employment for Disabled People
(www.ncpedp.orgDisability News & Information Service (www.dnis.org)

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