Jessica Park
Jessica Hillary Park was born on July 20, 1958, in Williamstown, where she still lives and works as a mail clerk for Williams College. Jessy’s mother documented her daughter’s struggle with autism in two groundbreaking books, The Siege, The First Eight Years of an Autistic Child (1967) and its sequel, Exiting Nirvana, A Daughter’s Life with Autism (2001). Nirvana is the term her mother used to describe her daughter’s early age state of “enraptured, timeless, self-stimulating nothingness.” When Jessy was found to have autism at the age of about three, little was known about the neurological disorder.
To make Jessy notice the world around her, her mother attributed colors to things. Jessy was quickly able to describe colors with adjectives such as “peacock-green.” Her parents realized that art was the perfect tool to expand her social skills. Jessica Park is largely a self-taught painter. Growing up in a well-educated environment, she was in contact with books, especially art books. Furthermore, her grandfather was an art historian and an artist whose original prints are on display in the family home. Jessy did not paint consistently until patrons started buying her work. Jessy exclusively uses acrylic paints. Before starting to paint, she carefully arranges all 64 tubes and never uses a hue straight from the tube. Her heightened color sensitivity allows her to work with six or seven different shades of one color, diluted to the point that they look white to the unsuspecting eye. In order to achieve the most detailed rendering of a building, she sketches on site.
Despite this focus on detail, Jessy’s technique has progressed to the point that she now uses colors to suggest shadows. She can detach herself from the camera-like vision supposedly characteristic of autistic people, and she uses her artistic license for the sake of the composition. That achievement is to her parents’ credit, for they were the ones who foresaw the use of “art as a vehicle for social learning,” according to Clara Park.
However, her buildings made of many juxtaposed small segments betray her inability to grasp the object as a single entity. Jessy’s paintings clearly speak of the Nirvana that she has left behind and offer us a vision of our world seen through her mind. As a result, she has turned her disability into strength. Jessy’s autism is incurable, but her story is nonetheless one of success, of a thousand small skills scrupulously acquired and a thousand more yet to be mastered.
Description:
“This is the southeast lighthouse in Block Island which was built in 1873. The iridescent rainbow altocumulus lenticularis below Ursa Minor are nacreous clouds. Notice the purple sky through the lighthouse window is bluer, because of the panes. The light to the left is primrose yellow with lime lines. The muntins around the light are phthalo blue. The two rails are black. The base below the light is magenta. Part of the bracket is blue. The window panes in the house and the ring on the bracket finial are French untramarine blue. The part to the right of the molding is the same color as the mortar between the bricks. The bricks are American bond.”
Description:
“These windows are in Aunt Adrienne’s house in Brooklyn. The doors slide open and close. There’s a shadow on the right-hand panel. The doors open on three hinges. The floor that is the closest is made of wood. I made it brick red instead of brown just to make it interesting. The floor that is behind it is made of slate tile. The fence was a neutral color, but I made it pink with light magenta lines. The tree is in the yard. The sun is peeking out from behind the tree. The sun was setting when I started to sketch this. I went to Aunt Adrienne’s house with my parents in June, and I happened to make this sketch, but I didn’t finish it until the 30th of December.”
These are just two of many!
Public Forum – Designing the Genes of Future Generations
Thought this may be of interest with all the input on Erin’s article.
Wednesday, May 7, 2008 (7:30PM)
The Michelin Theatre, Discovery Centre, 1593 Barrington Street
Sponsored by Novel Tech Ethics (Dalhousie University) & the Discovery Centre
Admission: Seating is limited. Contact 494-2873 or register at http://www.noveltechethics.ca/site_events.php?page=320 in advance to reserve your free ticket.
As screening for genetic abnormalities becomes more and more prevalent as part of prenatal care and assisted human reproduction, we open up a host of important and contentious ethical questions. Will we be able to change the genetic makeup of our offspring in the future? Should we try to do so now, or in the future? What sorts of genetic conditions should we allow ourselves to seek to prevent, alter or enhance now or when it becomes possible to do so in the future? Why? Who all might be affected, positively or negatively by these practices? What should our way forward be with these technologies? Come participate in a panel discussion lead by experts in the field that will cover issues relating to the science and ethics of reprogenetics.
Panelists:
Catherine Clute, Patient Representative, Meredith Schwartz, Philosopher & Bioethicist, Linda Hamilton, Obstetrician & Gynaecologist
Click here for directions to the Discovery Centre or paste this link you’re your browser: <http://www.noveltechethics.ca/pictures/File/Events_Jobs_Grants/1593%20Barrington%20Street,%20Halifax%20Nova%20Scotia%20-%20Google%20Maps.pdf>
DISABILITY CULTURE
I think that disability rights and independent living movements have accelerated the transmission of disability culture. As I experience more through work and courses I am struck by the common usage and understanding of such terms as “ASD,” “supercrip,” “overcoming,” “medical model,” and such concepts as adversive disablism, normalization, and inclusion. Many of our emotional reactions and beliefs regarding issues such as eugenic abortion, nursing homes, community access, entitlement to accommodation, media images and “special” anything are becoming universal. This is due, I believe, not only to our exchange of more information, but also to our transmission of values about life with a disability.
Maybe “culture” is not the proper term for a set of elements deriving from a mixture of: inherent differences, societal treatment and transmitted facts, interpretations, and preferences. But what better term is there for that collection of common views and expressions that increasingly characterize disabled people everywhere? What else do you call that familiar, comfortable idea of shared meanings that disabled people, even strangers, fall into when they meet? That wide-ranging compatibility is difficult to convey to those outside of their community, however sensitive we may be to disability rights issues.
Disability culture seems to have become a popular term among people whether activist or not, young or old, scholarly or undereducated. I see an underlying claim that goes something like… they have learned something important about life from being disabled that makes them unique yet affirms their common humanity. They refuse any longer to hide their differences. Rather, they explore, develop and celebrate their distinctness and offer its lessons to the world. The world just needs to listen. What can possibly be wrong with that?
Do We Have To Spell It Out??
Oh my God!!!
This is an actual song. Hard to believe that some people actually think this way! I guess it shows we have quite a way to go.
Fang – Destroy The Handicapped lyrics
Don’t like those wheelchairs
Wanna push ‘em down the stairs
They get in my way
They make the goverment pay
They run into me
They drool all over me
They don’t know how to pee
God help me
Blind people can’t see they bump into me
Deaf people can’t hear, they have defective ears
Line em up against the wall
Thow a grenade watch em fall
They are so fuckin’ lame
They’re scared to run away
“Ruby, Don’t Take Your Love To Town”
“Ruby, Don’t Take Your Love to Town” is a song written by Mel Tillis, which was made world famous by Kenny Rogers (First Edition in 1969). The song is about a disabled, dying veteran of “that old crazy Asian war” (The Korean War), who begs his lover not to cheat on him. Tillis based the song on a couple that lived near his family in Florida. In real life, the man was wounded in Germany in WorldWar II and sent to recuperate in England. There he married a nurse who took care of him at the hospital. The two of them moved to Florida shortly afterward, but he had periodic return trips to the hospital as problems with his wounds kept flaring up. His wife saw another man as the veteran lay in the hospital. Tillis changed the war to the more recent Korean War in the song, and departed from the ending that happened in real life: the man killed his wife in murder-suicide. This is however alluded to in the song, with the singer avowing, “If I could move I’d get my gun and put her in the ground.”
“Ruby, Don’t Take Your Love to Town” Lyrics
You’ve painted up your lips
And rolled and curled your tinted hair
Ruby are you contemplating going out somewhere
The shadow on the wall tells me the sun is going down
Oh Ruby, don’t take your love to town
It wasn’t me that started that old crazy Asian war
But I was proud to go and do my patriotic chore
And yes, it’s true that I’m not the man I used to be
Oh, Ruby… I still need some company
It’s hard to love a man whose legs are bent and paralysed
And the wants and the needs of a woman your age, Ruby I realize,
But it won’t be long I’ve heard them say until I not around
Oh Ruby, don’t take your love to town
She’s leaving now ’cause I just heard the slamming of the door
The way I know I’ve heard it slam some 1oo times before
And if I could move I’d get my gun and put her in the ground
Oh Ruby, don’t take your love to town
Oh Ruby.. For god’s sake turn around
What are Common Types of Disabilities?
I felt the need to take disability out of the classroom for a moment. I began to notice that I was only looking at it through the eyes of an educator. I also wanted to shed some light outside the classroom and at different stages of life. What about our aging parents and dementia? We seem to look at that as an illness rather than a disability. There obviously is more to the term disability than the images the average person conjures up. I guess disability itself is a bit of a spectrum and where people fall is sometimes viewed differently. I just wanted to look at the bigger picture. So here is what Canada sees as disability.
The most comprehensive and up-to-date profile of disability in Canada comes from the 2001 Participation and Activity Limitation Survey (PALS), sponsored by the federal government. PALS has categories of disability for adults (age 15 and older) and categories for children (age 0-14).
Types of disability among adults (age 15 and older)
- Hearing
Difficulty hearing what is being said in a conversation with one other person, in a conversation with three or more persons, or in a telephone conversation.
- Seeing
Difficulty seeing ordinary newsprint, or clearly seeing the face of someone from 4 metres (12 feet).
- Speech
Difficulty speaking and/or being understood.
- Mobility
Difficulty walking half a kilometer or up and down a flight of stairs, about 12 steps without resting, moving from one room to another, carrying an object of 5 kg (10 pounds) for 10 meters (30 feet), or standing for long periods.
- Agility
Difficulty bending, dressing or undressing oneself, getting into and out of bed, cutting own toenails, using fingers to grasp or handling objects, reaching in any direction (for example, above one’s head), or cutting own food.
- Pain
Limited in the amount or kind of activities that one can do because of a long-term pain that is constant or reoccurs from time to time, for example, recurrent back pain.
- Learning
Difficulty learning because of a condition, such as attention problems, hyperactivity or dyslexia, whether or not the condition was diagnosed by a teacher, doctor or other health professional.
- Memory
Limited in the amount or kind of activities that one can do because of frequent periods of confusion or difficulty remembering things. These difficulties may be associated with Alzheimer’s disease, brain injuries or other similar conditions.
- Developmental
Cognitive limitations (restricted knowledge) due to the presence of a developmental disability or disorder, such as Down Syndrome, autism or mental impairment caused by a lack of oxygen at birth.
- Psychological
Limited in the amount or kind of activities that one can do because of an emotional, psychological, or psychiatric condition, such as phobias, depression, schizophrenia, drinking, or drug problems.
Types of disability among children
For children age 0-14:
- Hearing
Difficulty hearing.
- Seeing
Difficulty seeing.
- Chronic condition
Limited in the amount or kind of activities that one can do due to the presence of one or more chronic health conditions that have lasted or are expected to last six months or more, and that have been diagnosed by a health professional. Examples of chronic conditions are asthma or severe allergies, heart condition or disease, kidney condition or disease, cancer, epilepsy, cerebral palsy, spina bifida, cystic fibrosis, muscular dystrophy, and fetal alcohol syndrome.
For children age 5-14:
- Speech
Difficulty speaking and/or being understood.
- Mobility
Difficulty walking. This means walking on a flat firm surface, such as a sidewalk or floor.
- Dexterity
Difficulty using hands or fingers to grasp or hold small objects, such as a pencil or scissors.
- Learning
Difficulty learning due to the presence of a condition, such as attention problems, hyperactivity or dyslexia, whether or not the condition was diagnosed by a teacher, doctor or other health professional.
- Developmental disability or disorder
Cognitive limitations due to the presence of a developmental disability or disorder, such as Down Syndrome, autism or mental impairment caused by a lack of oxygen at birth.
- Psychological
Limited in the amount or kind of activities that one can do because of an emotional, psychological, or behavioral condition.
For children age 0-4:
- Developmental delay
Child has a delay in his/her development, either a physical, intellectual or other type of delay.
Sources:
Statistics Canada: Types of disabilities among children
Statistics Canada: Types of disabilities among adults
http://www.hrsdc.gc.ca/en/hip/odi/documents/PALS/PALS003.shtml
On a Lighter Side
SCHOOL – 1957 vs. 2007
Scenario: Jack goes quail hunting before school, pulls into school parking lot with shotgun in gun rack.
1957 - Vice Principal comes over, looks at Jack’s shotgun, goes to his car and gets his shotgun to show Jack.
2007 - School goes into lock down, FBI called, Jack hauled off to jail and never sees his truck or gun again. Counsellors called in for traumatized students and teachers.
Scenario: Johnny and Mark get into a fistfight after school.
1957 - Crowd gathers. Mark wins. Johnny and Mark shake hands and end up buddies.
2007 - Police called, SWAT team arrives, arrests Johnny and Mark. Charge them with assault, both expelled even though Johnny started it.
Scenario: Jeffrey won’t be still in class, disrupts other students.
1957 - Jeffrey sent to office and given a good paddling by the Principal. Returns to class, sits still and does not disrupt class again.
2007 - Jeffrey given huge doses of Ritalin. Becomes a zombie. Tested for ADD. School gets extra money from state because Jeffrey has a disability.
Scenario: Billy breaks a window in his neighbour’s car and his Dad gives him a whipping with his belt.
1957 - Billy is more careful next time, grows up normal, goes to college, and becomes a successful businessman.
2007 - Billy’s dad is arrested for child abuse. Billy removed to foster care and joins a gang. State psychologist tells Billy’s sister that she remembers being abused herself and their dad goes to prison. Billy’s mom has affair with psychologist.
Scenario: Mark gets a headache and takes some aspirin to school.
1957 - Mark shares aspirin with Principal out on the smoking dock.
2007 - Police called, Mark expelled from school for drug violations. Car searched for drugs and weapons.
Scenario: Pedro fails high school English.
1957 - Pedro goes to summer school, passes English, goes to college.
2007 - Pedro’s cause is taken up by state. Newspaper articles appear nationally explaining that teaching English as a requirement for graduation is racist. ACLU files class action lawsuit against state school system and Pedro’s English teacher. English banned from core curriculum. Pedro given diploma anyway but ends up mowing lawns for a living because he cannot speak English.
Scenario: Johnny takes apart leftover firecrackers from 4th of July, puts them in a model airplane pain t bottle, blows up a red ant bed.
1957 - Ants die.
2007 - BATF, Homeland Security, FBI called. Johnny charged with domestic terrorism, FBI investigates parents, siblings removed from home, computers confiscated, Johnny’s Dad goes on a terror watch list and is never allowed to fly again.
Scenario: Johnny falls while running during recess and scrapes his knee. He is found crying by his teacher, Mary. Mary hugs him to comfort him.
1957 - In a short time, Johnny feels better and goes on playing.
2007 - Mary is accused of being a sexual predator and loses her job. She faces 3 years in State Prison. Johnny undergoes 5 years of therapy.
Just a few things to think about and to show that things do change with time…not always for the better. I also hope someone got a laugh as many of these blogs are a bit on the heavy side and I had to throw in a bit of “Lorelei”.
Changing Attitudes to Disability
Individual attitudes towards disabled people and society’s reaction to disability have changed throughout history. In recent times the process of social change have concluded in the disability rights movement. Pressures from groups of disabled people have resulted in legislative changes, which should lead to more equitable participation for disabled people.
Modern approaches to dealing with disability stem from the rise of the industrial revolution in the late 18th century. Production moved away from the agricultural and home economies in which disabled people could be supported, to industries such as mining and fishing. Society’s solution was to house disabled people in institutions and the 19th century saw the rise of workhouses and asylums.
This economic climate was coupled with a growth in medical knowledge and many types of disability were seen as “treatable”. Thus, disability was categorized into different impairments and different “treatments” offered depending on how a disabled person was categorized. Specialist institutions might treat deafness while people with mental illness or learning difficulties would be treated in long stay mental hospitals. This institutional and medicalized approach to disability is still evident in some respects today and has been described as the medical model of disability.
The sixties and seventies saw a move towards community care but this was still seen as institutionalized with the interests of the professional in mind rather than the people in care. During the seventies and eighties several reports and acts on segregated care and education for disabled people were released. However, although legislation has sought to increase the participation of disabled people into mainstream activities of society it is claimed by many disabled activists and disabled people’s groups that the inclusivity and full citizenship for disabled people has not yet been achieved.
Most people will have had little experience on a day-to-day basis of meeting disabled people. The images we form about disabled people can be limited and based on other experiences such as their portrayal through mass media, particularly TV and film.
The language we use to talk about disability plays an extremely important part in the way society views disabled people. This is often a confusing area since people who are not disabled themselves feel worried about offending one particular group of people by using the wrong term and the terminology adopted by disabled people often changes. There is not universal agreement on how to describe disabled people since disabled people themselves often disagree on the ‘best’ term. On a final note…remember there is still a long way to go before we combat adversive disablism!
Quotes for Thought
I am unsure as to when the first noteworthy disability related quote was uttered, but I do know that through the years the great and the good (and the not so good) have been unable to resist sharing their views on disability and disabled people. Some of these statements have been thought-provoking and profound; but just as many have been toe-curlingly embarrassing, and it’s easy to imagine the people who said them immediately wishing that the ground would open beneath their feet and swallow them up. So I have taken a few to share with you.
“The only disability in life is a bad attitude.”
Scott Hamilton
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.”
Martina Navratilova
“The invalid is a parasite on society. In a certain state it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicaments after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society.”
Friedrich Nietzsche
“I count not being able to see as an inconvenience rather than a disability.”
David Blunkett
“You and I have been physically given two hands and two legs and half-decent brains … some people have not been born like that for a reason. The karma is working from another lifetime. What you sow, you have to reap.”
Glenn Hoddle
“We, the one’s who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.”
Robert M. Hensel
“The hard reality is this. Society in every nation is still infected by the ancient assumption that people with disabilities are less than fully human and therefore, are not fully eligible for the opportunities which are available to other people as a matter of right.”
Justin Dart
“We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don’t see a cripple. I haven’t met anyone yet who isn’t handicapped in some way. So what’s the big deal? Don’t hide your deformity. Wear it like a Purple Heart.”
Georgiann Baldino
“The limits of my language are the limits of my mind. All I know is what I have words for.”
Ludwig Wittgenstein
“Illness or disability takes away a part of your life, but in doing so, it gives you the opportunity to choose the life you will lead, as opposed to living the one you’ve simply accumulated over the years.”
Arthur Frank
“Humanitarianism is the expression of stupidity and cowardice.”
Adolf Hitler
