Race to Catch the Future
Plenary Session Mike Wehmeyer Kansas University
A glance back: A history of our field
The past is prologue to the future and its important to study the past. How did our understanding and public perceptions of the past shaped the lives of people living with intellectual disability? The story of intellectual disability was understood in the dawn of civilisation in early societies, conceptualisations of disability were veiled in superstition and mystique and this continued into the medieval and middle ages the construct of intelligence was unknown as was prescientific medical concepts of cognition. All legal systems started to identify "natural fools" or "idiots" and this was identified by people who had difficulties with counting etc. The term idiot was someone who was different was identified in the late Middle Ages....around social and religious capacity. It referred to a differentness as the era emerged that this differentness and in the early modern era was associated with a lack of humanness. Somewhat linked to the concept of "changelings" in the late 16th century as idiotness and something short of fully human and this contributed to a movement towards identification. People identified as different and incompetent and thus began separation and this continued to the 19th century was coined by early enlightenists as the first efforts at rehabilitation in story of "Victor". Victor did learn but this rehabilitation was considered a failure as Victor did not learn enough. Idiocy was not curable but could be remediated with systematic instruction. Specialisation around idiocy as separate from insanity. The first efforts were French and in 1848 started for the feeble minded in USA by Wilbur and more and more of these experimental schools were developed. In a spirit of positiveness. In June 1876 the founders of Wilbur, Brown and others the first meeting of the aaidd was founded. Pioneers in change in the experiences of people living with disability that had remained the same since the Middle Ages. Optimism was replaced by pessimism with an over burden system and society still had religious views about disability....in the late 1800s were institutions were again established....In early 1900s institutions were again popular to separate PWD from the rest of society to protect society. This increased in 1940 60,000 to 160,000by 1950 and these facilities were not designed to have so many people residing in them. Pwd were considered morally and the eugenics movement and enforced sterilisation with 50,000 AMericans were forcibly sterilised. Black took pictures and developed Christmas in Purgatory...rows of iron beds and horrendous conditions...and there is a hell on earth at Xmas 1965. Parents began to question the need to have the system we have....began to remove the stigma of being a parent of an individual living with intellectual disability. Kennedy administration also facilitated change and establishment of civil rights and start of a push for community inclusion and self advocacy. Establishment of different ways of thinking about disability and continued with work of Robert Schalock and others. The take home messages... in the words of Dickens ..it was the best of times and it was the worst of times....could be writing about the lives of people living with intellectual disability. People with great promise but experience lives of disappointment. We continue to see juxtapose of situations a person with Down's syndrome gets an organ transplant but another company is sued for firing a person because the have a disability. If we continue to see people as different there will be discrimination. We have enough evidence of that. It is a civil lesson we should have learned by now. Separation does not bring about equal. The injustices are about the lack of our imagination, we know how to give people a quality life and we need to do it, have a commitment to it. We have always been wrong about what we expect people with intellectual disability to achieve, they achieve much more and we must accept that reality. The past is prologue means that as in a play is what is really past, is the first act and that there is more to come and that is the good news as we go forward. we have work to do and there is no time to waste.
The future...the technology we have to take us from where we are to where we need to be. Its not clear that people living with disability are as engaged with technology as the rest of us. How do we get to the table and contribute to what technology will look like in the future and how people living with disability will be involved. Orchestra = make more money from front row seats and use technology to transmit sound. Technology can be useful but it can also separate. Are people living with disability using three screens and a cloud, desk computer, laptop and cell phone. As long as I have a device and an internet connection I can do my work. Max's sandbox - this goes on top of microsoft office...Animationish....gives ability to determine what you use that links to your ability. By building in flexibility into interfaces technology developers are trying to make difference ordinary. We are seeing imbedded supports and flexible means of interacting with technologies linked to universal design for learning. This results in cognitive access to allow for more choice and greater independence. Are we helping people living with disability to understand technologies and what works for them. Smart technologies are allowing us to be able to control our lives remotely. Digitalisation replaces paper information and we expect things to talk to each other and its easier to track people. We are digitising daily life. Newton and Moocs are trying to personalise learning. 21st century gold rush its called algorithms and not many people living with disability involved so others decided what we are going to digitise. We are moving towards virtual companions such as virtual pets. Concluding statements recommend reading "Too Big Too Know" what happens when the smartest person in the room is the room; as well as the "The Future Bubble".
Disability public policy....Marty Ford from The Arc
Everybody is on their own, philosophy and privatisation as opposed to social responsibility. What was possible in public policy in the past cannot happen now and making major change all at once is no longer possible. In recent years were are sidelined as only working for the status quo...we are improvement...we are having to work within congress we have...incremental change is all we have as even small changes cost billions of dollars. In the past we could work in a bipartisan way...not as easy as it used to be. Our goals were more clear cut in terms of policy in the 1980s it was about closing inst...new bills are about nuances to existing changes and they are more subtle its hard to rally the troops. Members of congress are not nearly ....ie defeat of the ratification of UN convention on rights of people with disabilities. We have lost great champions in congress and we are about to loose more. We have lost champions that are in congress and they do not fly the disability flag any more. In fact they are weakening existing programs. We need to work to find new champions. Organisations are getting together are developing shared public policy agendas and the divisions between groups are lessening to cultivate members of congress. I don't think we would get the 1990s Americans with disabilities Act through today. There were many acts passed...civil rights, vocational rehabilitation, supported employment, affordable care etc.. is complacency setting in with the fend for your self attitude of congress? Whats happening now is up in the air and everything is on the table; including possibility of more cuts and reductions in eligibility to medicaid, social security and supplemental security income. Although the American economy is improving and tax revenues are up, there is no certainty. There are media attacks on programs such as medicaid and SSI so this is a serious threat to these programs. There are threats also to the Americans with disabilities act and the individuals with disabilities education Act. We also need changes to immigration laws to allow siblings living with disabilities to join family members in coming to live in USA. Keep your eye on the big picture, do not give in and we have achieved a lot and we can achieve more and we could lose a lot if we are not vigilant and continue to work together. Attend events, we need to meet with politicians are regularly as you can, attend their events, make the encounters happen. Stay in touch with them even if they move portfolios and keep building bridges. Mentor young colleagues in this old fashion "in person" approach. Social media is not enough. The grass roots at the local cities and towns is where it needs to happen.
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