DISABILITY

17 November

PERSPECTIVES on DISABILITY MOOC has ended this week and a segment of videos with advice to parents and students were given by the guests who participated along the course.

The course was very well organized and it only lacked more dynamic discussion.

The focus approach on attitudes is very relevant and this course should have more editions with more people involved, because there’s not much offer in this field and there’s a long road towards inclusion.

9 November

Week 9 topic is about Employment, a big issue for everyone, because it often defines what a person is or does.

Current statistics in USA show that there’s a huge gap between people employed with (circa 33%) and without disabilities (circa 75%).

The World Report on Disabilities includes tables with the situation of employment in different countries around the world.

Worl_Report_employement_table_8

The next table presents the poverty condition of people with disabilities

World_report_employement_table_8.2

The World Report on Disability (2012) acknowledges:

«Some employers continue to fear that people with disabilities are unqualified and not productive. But people with disabilities often have appropriate skills, strong loyalty and low rates of absenteeism, and growing numbers of companies find it efficient and profitable to hire people with disabilities.» (p. 236)

«Another study found that people with intellectual impairments were three to four times less likely to be employed than people without disabilities – and more likely to have more frequent and longer periods of unemployment. They were less likely to be competitively employed and more likely to be employed in segregated settings.» (p.238)

Unfortunately there are barriers towards employment of people with disabilities, for misconceptions, stereotypes, fear to spend too much time to supervise. Such attitudes are grounded on prejudice and the belief that people with disabilities are less productive than their non-disabled counterparts. However, a person with disabilities is so eager to get a job that is willing to work hard and be reliable. The employer may benefit from the willingness and the dedication of a person with disabilities. Very often these misconceptions are also shared among family members, who have low expectations.

The social isolation of people with disabilities restricts their access to social networks of friends and family that could help in finding employment.

Usually larger companies have more jobs to offer to people with disabilities. Usually people with disabilities are good workers, they tend to stay longer on the job, to have fewer absences, are hardworking, reliable, have identical performance and require no more supervision that other workers. Public see as positive that a company hires people with disabilities.

People with disabilities are usually in disadvantage, even when employed, they commonly earn less than other workers, and women with disabilities are at a lower level. The wage gaps between men and women with and without disabilities are thus as important as the difference in employment rates.

ADA legislation is not as well known as should be in US. Companies with 15 workers or more get support to include workers with disabilities. There’s a common belief that a person with disabilities is not qualified. Another wrong belief is that a small company hiring a person with disabilities will face a burden regarding accomodations. A person with disabilities faces financial cuts for getting a job, losing one’s social subsidies, which is unfair, since special needs prevail.

employment_key_points

There are programmes in the USA (since World War I) that supports employement of people with disabilities. Vocational Rehabilitation is far advantageous to help to find a job than to get social security for the rest of one’s life. An example presented in the MOOC:

and an american website that informs about job accomodations – http://askjan.org/

A small company in Portugal is struggling to overcome the crisis. It was created 17 years ago and employed 39 workers, most of them with disabilities, to day is reduced to 13 and at risk of closing – DEFICIPRODUT

2 November

Week 8 focused on Community and Independent Living. It introduces  to a significant topic in the lives of many individuals with disabilities and their families. Specifically, how does one live as independently as possible if supports are needed? The lesson segments emphasize the history of institutionalization, Disability Rights Movement, legislation, and current barriers to community living. Guest speakers share their views throughout. A segment is also devoted to family perspectives. Parents and siblings talk about their concerns regarding family members who need a lifetime of supports.

A brief history of disability in USA is presented, which led me to explore several timelines on the subject and decided to make one of my own, gathering information from Canada, UK and other international sources:

http://timeglider.com/timeline/6f03a56d1139fcc5

Searching the history of disability is a heavy burden because of the horrendous treatment topeople with disabilities, not only long ago but during the XX century. Hitler’s Aktion T4 of extermination of people with disabilities is just an example inspired by eugenics theories of purity of race and abusive interpretations of selection of species.

I found a post on a portuguese blog of a citizen with tetraplegia with the history of wheelchair. And an interesting brasilian article which illustrates the history of disability – A pessoa com deficiência e sua relação com a história da humanidade.

An important topic was the inclusion as a civil right and advocacy. Once more Barriers, namely attitudinal, were adressed, family support and finally Assistive Technology and Universal Design.

20 October

Week 7 focus on disability in post-secondary – vocational programs, colleges and universities.

It focus on the rights of students not to disclose in front of colleagues what is wrong with them (namely those with hidden disabilities), so teachers should talk about the difficulties in a private setting. The student has to present a statement for accomodations and the teachers have to provide the conditions according to the law.

More students are attending HE than ever, more architectural accessibilities, more online programmes, more technologies (AT) provide more access to studies. Increasingly, barriers are being removed.

Having SEN students is a benefit since it increases social consciousness and fosters universal design.

While in K-12 the law entitles that all SEN pupils are provided the conditions, in post-secondary, students are eligible or not. Admission criteria apply to all, with or without disabilities. All have to meet the academic standards. There is no IEP. The student has to provide the documentation to require special accomodations at the college/university office. Modification to curricula are not provided. Alternative formats or an interpreter may be provided.

In HE, nobody is going to take the initiative, the first step to seek help has to be given by the student.

In Portugal, the Students Support Office in HE institutions usually deal with needs of students with disabilities.

Another important theme of this week was Universal Design for Learning and the advantages of the concept of planning and designing strategies and materiais for a multiplicity and heterogeneous spectrum of students, with or without disabilities. Mind CAST website-http://cast.org/udl/index.html

UDL_guidelines

13 October

Week 6 theme addresses «early childhood intervention» till highschool. Identification and intervention are key to the child’s future.

In the first video Prof. Long gives some historical data, reporting that prior to the 70’s (in USA)  only 1 in 5 students with disabilities was educated and only by that time the first inclusive laws were published. So there’s a long history of exclusion. The I.D.E.A.  (Individuals with Disabilities Education Act) was passed in 1975.

At present the human and civil right is  guaranteed and there’s  around 12% of students with disabilities in schools, most of them are invisible disabilities (mental and emotional disabilities).

In Portugal the last law that reorganized special education dates to 2008 and the trend is to include (all) in mainstream schools. ICF is the referral tool and only permanent special needs/disabilities are eligible for special accomodations.

With many kids coming from special schools entering mainstream schools, some special units were created in schools to concentrate special resources (specialized staff, equipment, materials…). So, ASD units and multiple disabilities units were created in many mainstream schools and parents are advised to send their children to these schools. Reference schools for the blind and for the deaf were also considered.

The European Agency for the Development of Special Needs has collected data about the situation in each european member-state

http://www.european-agency.org/publications/ereports/sne-country-data-2012/SNE-Country-Data2012.pdf

PT_SEN_data

I.D.E.A. guarantees the least restrictive environment for these children, and provisions for pupils with disability include IEP (16 eligible categories), elaborated by a team that may include the SEN teacher, general teacher, spychologist, specialist staff (speach therapist, sign language interpreter…), parent.  After IEP formulation, accomodations and interventions are decided.

In Portugal IEP is mandatory for SEN pupils and has also the intervention of different actors, and has to be subscribed by the school and parents.

Early intervention in USA starts from birth to 3 years old, period during which children’s brain have more plasticity. Learning skills are acquired in families environment, so families are important actors in this process, they know their children best and live with them on a daily basis.

In Portugal, early childhood intervention covers children from 0-6 years and is a joint responsibility from Health, Social Security and Education services.

Public kindergartens don’t cover the whole population, so priority is given to 5 year olds. Private kindergartens are the costly alternative for parents. Some would pay as much as HE fees.

Accomodations are provided when barriers cannot be overcome and they range from school pathologist, school counselor, psychologist, audiologist etc. It can include a sign language interpreter, technologies, etc.

Some factors influence inclusion: law enforcement, funding and teacher preparation.

In Portugal, law enforcement was important to move many children from special schools to mainstream schools. Funding is a big issue, because financial resources are lacking for all services and therapies required. As for teacher preparation, there are SEN teachers with different specializations that help general teachers, but these are not yet prepared to deal with disabilities and tend to think that SEN pupils are the target public of SEN teachers. So, inclusion is still not an embedded culture in schools. It will take time and resources.

Prof. Long says that the parent who advocates on the rights of his/her child is the one that will get the outcome. Federal funds only cover 10% of the total cost of special education services. Wealthier districts may compensate this shortage of funding for services and supports, but pupils with disabilities in poorer districts will be in disadvantage.

In Portugal, we have a centralized policy and financing of schools, but advocacy is always important, either from teachers, either from parents, or other entities concerned with special needs. The ones who struggle most usually get more.

Prof. Long says that most teachers (in USA) have poor training to deal with disability and tend to have medical approaches, focusing on disability rather than on UDL and multiple ways to provide access to different needs.

I agree, more and more we need individualization and personalization of learning, either for regular or special pupils. What we need is to consider each pupil a «special one».

It’s important to discuss disability in the classroom and set a climate of inclusion.

In USA, teachers are legally binded to allow pupils with special needs to have more time to complete assignments, to read out loud, adapt test to the pupil’s level, etc. In Portugal, our special needs legislation also comprises such accomodations.

It’s important that the general teacher has support from SEN teacher, to help to understand the child’s learning style and behaviour patterns.

If UDL principles are followed perhaps less accomodations might be required.

The problem of bullying is common regarding children with disabilities.

10 basic steps to special education

Experimenting with full inclusion of disabled students in the classroom

Bullying and teasing of youth with disabilities: creating positive environments for effective inclusion

Identifying children with disabilities

Achieving equal access through accomodations and universal design

6 October

Week 5 theme «Response and Adaptation» questions if it’s OK to address a person with disabities for the first time and ask about their problem. People find it a rude thing to do, since it’s an invasion of privacy.

Dr. Deb Gough addresses the issue of loss when disability happens and how adaptation and response  works. Dreams are shattered and expectations about the future are ruined, either for someone who acquires disability or parents that are confronted with a child with disability. Feelings of fear, anxiety, stress, sadness depression are a common consequence.

And before the situation there are actions and talks that help or annoy.

And expressions that annoy can result from common misconceptions as « don’t worry, everything will be fine»; «everything happens for a reason»; «it’s really not that bad»; it could be much worse. I know someone…»; «I know just how you feel»; «You’ll figure out»…

But there are attitudes that can be more appropriate, just beeing there in silence… or things that people might need to hear, such as: »what would you like to talk about…»; «I can see that it’s very painful»; I’ll help any way I can, I have information about….»; We’ll do our best job with you/your baby…»; «if you need some time for yourself…»; I can only imagine how difficult this is….».

So the sensible thing to do is «be yourself, be comfortable with yourself and just be with others».

Mentor tip – disability acceptance

Adapting to disabilities as model for other forms of culture shock

Autism…acceptance versus cure?

What siblings would like parents and service providers to know

2 October

In week 4 I submitted the following reflections in the dscussion forum of the course:

I’ve watched the videos of this week and in fact there’s a long history of discrimination towards disability and in many countries still remains so. As there’s a long history of discrimination towards women, in many societies a week target.

There’s a long history of discrimination towards certain minorities. Romani people (though Romania belongs to the european union) keep excluded from society. Each country tries to get rid of them, in spite of free circulation among EU countries.

Perhaps some people still feel they should be exterminated – Hitler tried. Eugenics (greek word for «good genes») policies didn’t sterilized only many people with disabilities, they tried to eliminate races, that were different to the caucasion pure ones. It was one of the core beliefs of nazism. Eugenics emerged in the 19th century, by Francis Galton (a cousin of Darwin),  who believed that desirable traits were hereditary. And it’s shocking that many of these policies ran till late in the 20th century and certainly still have advocates (fascist movements are rising in Europe, with the economic crisis, attacking immigrants and evoking violent unacceptable aggressions). Discrimination is just next door.

«Many countries enacted various eugenics policies and programmes, including: genetic screening, birth control, promoting differential birth rates, marriage restrictions, segregation (both racial segregation and segregation of the mentally ill from the rest of the population), compulsory sterilization, forced abortions or forced pregnancies, and genocide… The methods of implementing eugenics varied by country; however, some of the early 20th century methods involved identifying and classifying individuals and their families, including the poor, mentally ill, blind, deaf, developmentally disabled, promiscuous women, homosexuals, and racial groups (such as the Roma and Jews in Nazi Germany) as “degenerate” or “unfit”, the segregation or institutionalization of such individuals and groups, their sterilization, euthanasia, and their mass murder.» (in Wikipedia)

The visible disabilities have impact on people’s attitudes who respond primitively to appearence. We all get affected by certain kind of severe disabilities like those mentioned in one of the videos – Mike O’Brian. It makes us very uncomfortable and anxious. Attitudes like stare, avoid contact, turn away, avoid eye contact, ignore presence, are truly common. We all have done so (eventually still do, for self-defense).  But we have to contradict these feelings and realize that people with that kind of limitations have a strong will to overcome difficulties and can accomplish goals that certain «normal» persons do not.

I suppose I have mentioned in previous posts how important it is to give voice to people with disabilities and/or illnesses to state their viewpoints, because outsiders (experts included), remain outsiders. And it’s up to insiders to fight for their rights (supported by as many outsiders as possible, one never knowns when may become an insider).

The importance of attitudes and language and how it impacts in the self-esteem of people with disabilities is an issue that has a deeper meaning when spoken by those those who experience daily barriers.

I believe education and school are one of the main instruments to make a more inclusive society, and not only in what concerns disability.

«Born with» vs. acquired disablity is also an important issue. I believe that for people who were born with the disability, that condition is part of who they are, while an acquired  disability may be quite traumatic, because it’s a radical change in life.

I was surprised with Sarah’s testimony regarding the fact that her dog acted like an icebreaker to connect with other people, while the use of the cane might be an obstacle to that interaction. I never had thought of that. Perhaps there’s a natural empathy for a dog that performs a job to help a human and the fact that those dogs are very well behaved and friendly.

It was also curious to listen to Mark saying that his family feels uncomfortable that he speaks about his HIV problem among family friends. But probably because it’s too hurting rather than embarassing. I myself don’t like to speak about illnesses, even when they happen in the family. It’s a very private thing. Perhaps for some people may be therapeutical to speak about the problem and for others quite disturbing and upsetting. I suppose we just have to respect each others feelings. The concerns don’t go away just because one talks or doesn’t.

I think that prejudice against HIV is greatly overcome, the moment it became an illness that spread and is not specifically  associated to certains groups. For instance, I didn’t know that Asimov had died of HIV, which the family kept in  secret for reasons of respecting his memory. Probably, it was what felt right in that context at the time.

Other illnesses were stigmatized some decades ago, such as tuberculosis, which was highly contagious and people were fearful, because death rate was high. It’s a kind of middle ages attitude, when there’s no control of plagues.

However, attitudes are different according to each disease, there’s a moral judgement regarding some, a fear factor regarding others, a pity attitude in other cases.

24 September

In this third week on Media, Language and Arts, the videos available in the course (in Youtube) raise the problem of addressing a person with disabilities and the inconvenience of focusing on the subject of disability. The other issue is how the media portrays disability. These video segments continue to have guest speakers who have disabilities and state their viewpoints, which is a good way to put in real contexts and situations.

Intro – http://youtu.be/PSuvIl6GX-w

The introductory video addresses the problem of language  and advises to avoid certain innapropriate expressions and certainly hurtful and insultuous ones like «retarded», «crippled», «handicapped». Language has power and how one expresses him/herself affects the other person.

Emotional response – http://youtu.be/XnQd8AO28P0
This segment addresses the emotional response, when thinking of disability. Inspiration and pity sometimes emerge. How to interact with a person with disability as an equal is the right thing. It may be tiring for someone with a disability to hear that it’s inspirational certain daily routines just because one has a disability. Evoking pity is also a negative attitude. Certain public campaigns tend to appeal to pity to get money but it’s offensive to the dignity of a person with disability.

Accessibility – http://youtu.be/vwxrKj1jjDk

This video segment deals with web accessibility, the importance of alternative media for people with certain types of disability.

Videos need captions for deaf people and other type of disabilities. Video transcriptions for blind people. Described videos. Screenreaders and voice recognition programmes are also important for blind or low vision people.

Web design should follow WCAG guidelines. Web validators are useful to check the accesibility features of websites.

The last video segment of this week addresses «solutions». The disability doesn’t define the person – «an epileptic» , instead, a person who has epilepsy.

People must be aware of the terminology one uses when speaking or writing about disability.

A person with disability «doesn’t suffer from», or is «confined to» –  a person has a disability, or a person uses some device… a more neutral language is advisable, not a judgemental language. Put the person first and not on the condition.

One of the documents made available regarding «language on disability» is in the website of Syracuse University – http://sudcc.syr.edu/LanguageGuide/index.html

22 September

The menu of coursesites provides a webpage to «digging deeper» with many other resourses to explore. I’ve decided to create a livebinder on Disability and collect many of the links – http://www.livebinders.com/play/play/1033216

Some Universities webpages on disability models:

Stanford – Disability: Definitions, Models, Experience

Leiscester – The social and medical model of disability

Other links for web accessibility such as WebAim and technical issues like video transcription or captioning were also useful.

The Youtube Channel of CaptionMax with audio description movies – http://www.youtube.com/user/CaptionMax/videos . Example – The Lady Vanishes

A film on people with disabilities, filmed by themselves, their daily lives coping with disability – http://www.thirteen.org/rolling/thefilm/

18 September

Week 2 is dedicated to perceiving and defining disability and a set of videos were presented by Prof. Glong. I think that the testimonies provided by guests with disabilities clarify their viewpoints, contradicting some assumptions that may be taken by others.

Hidden vs.Visible disabilities – http://youtu.be/pEtNmbCFfTM

Disability as a Social Construct – http://youtu.be/R-WJov26_iA

Societal Perspectives – http://youtu.be/_e9VzGjkAsA

Medical Model – http://youtu.be/vQw5H_arqM8

Social Model – http://youtu.be/Ge-p8sAxBuY

Articles were also made available and I’ve particularly enjoyed reading «Models of Disability». The models were not new to me, but I consider this article one of the best I’ve read about the subject and decided to produce an artifact based on it – http://prezi.com/ghfka6tsasrr/models-of-disability/

Statistics about illness and disability in USA were also provided, which led me to revisit the World Report on Disability published by UN – http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf. This is a vast document that covers pretty much of the issues to be addressed by this MOOC.

9 setembro 2013

The course has started and a set of 5 videos introduced the teacher of the course and guests that will speak about disability issues. These videos give an overview of the course, and are accessible (with captioning and transcription):
1 Welcome and Course Overview – http://www.youtube.com/watch?v=rmdYvAa4CKw
2 Course Rationale, Benefits, and Limitations – http://www.youtube.com/watch?v=KxwNycZOzac
3 Course Values and Assumptions – http://www.youtube.com/watch?v=JVRxs7N_80E
4 Course Structure – http://www.youtube.com/watch?v=lGHh1FTLV4s
5 Navigating the Course – http://www.youtube.com/watch?v=pa4c82tNA28
The structure of the course will be based on a set of videos each week, guests, lecture segments, folder for readings, forum and activities, weekly quizzes for certification. A weekly live discussion is also programmed.
Youtube channel for the MOOC

Agosto 2013

The MOOC Perspectives on Disability starts on the 9th September 2013, lasts 10 weeks and is promoted by the University of Northern Illinois, College of Health and Human Sciences, by professor Greg Long, of the School of Allied Health and Communicative Disorders.

http://www.niutoday.info/2013/08/19/registration-open-for-niu-disability-mooc/

http://j.mp/niumooc13 – It will run in Blackboard platform

«The online course is designed to provide an introduction to disability and people who have disabilities. It is also intended to create awareness, comfort, and sensitivity toward disability as an issue of cultural diversity and inclusion. The course is designed to reach out to nearly all learners, from middle school to adults.»

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