Ed Roberts is considered the father of Independent Living. Some mistakenly think he was responsible for the development of the first Center for Independent Living, but he was one of many others who pulled the CIL together in Berkeley California in the early ’70s. He was not the first Executive Director but managed the center at a crucial time to the emerging disability rights movement.
Ed Roberts’s life provided direction and momentum to the Independent Living Movement.
It started two years before the Saulk vaccine; Ed Roberts contracted polio at age 14. It left him a person with quadriplegia and he used a respirator to breath. He studied at home and when it came time for him to graduate he was told he could not graduate because he didn’t complete driver’s education and PE. Ed challenged the decision and graduated. He sought funds from the state rehabilitation agency to attend college and was told he was too severely disabled. He challenged that and applied to the University of Berkeley, California. One of the deans said “We tried cripples, It didn’t work.” He did attend the University after convincing them to let him use the staff in the campus medical facility. They would help him get up, dressed and fed. Then, he would go on to class.
When others saw what he was doing and that it was working they too wanted to have that support. A group called the rolling quads formed. Then people in the community began asking for information and assistance and eventually that need produced the first Center for Independent Living.
Eventually Ed Roberts became the head of the California Dept of Rehabilitation… the one that first said he was too severely disabled to go to college.
Now there are many centers for Independent Living across our nation. There are well over 600 centers and then many of them have satellites. Illinois has 23 centers.
The Independent Living Movement is about all people who have various disabilities. Centers are required to serve a cross section of people with various disabilities. This serves to unite everyone as one group with a powerful potential to change the face of things.
The Independent Living movement recognizes that experience living with a disability is valuable to others who are just meeting the barriers and challenges. Sharing information comes quite naturally in the disability community and therefore in PACE. Many organizations speak of consumer directed services or goals chosen by the person being served and those are great steps towards consumer control. To have true consumer control the organization must have a majority of people with disabilities on the board and staff, including management positions. When people who have disabilities are controlling policies, and direction of the organization there is true consumer control.
PACE’s counterpart to “case managers” in the traditional service system are now called “facilitators”, the actual manager is the person with the disability them self. Our role is to provide support through information, skills training, advocacy and peer counseling.
Early IL advocates saw service providers as creating a dependency on the system. To alleviate dependency consumers must realize they can and have a responsibility to control their own life.
The role of the IL service provider is to assist and empower so that they are not just told they are in control but they experience the control.. In order to assist the consumer PACE staff provide skills training, information, referral, advocacy, peer counseling and transition services.
The concept of “consumer” is used to illustrate the act of choice as in selecting a product or service. Client is not used because it describes a person who is taking advice from “experts”. The independent Living Movement considers the person with a disability an expert in their own right. IL providers move away from the medical model where the person is a patient and needs to be directed. Disability is not necessarily a medical need.
The Barriers Concept
Independent Living looks at disability as a natural part of life, the difficulty arises when the environment does not allow for the difference. Our name “Persons Assuming Control of Their Environment “is from that concept. PACE is a support in the community that sets up programs to hurdle barriers in the environment. Some types of barriers are; architectural, attitudinal; programmatic, economic, social, communication. Supports for communication barriers may be flashing fire alarms or an interpreter for the deaf, magnifying programs for people who have low vision, or talking book audio tapes for people who are blind. Here at PACE we focus on the environment and those barriers, we don’t blame the disability.
The Right to Fail PACE staff understand that a consumers control may lead them into a decision that staff would not consider the most advantageous way to achieve their goal. In that case the staff will present their concerns and go over possible outcomes of each option being considered. Staff will also respect that the consumer is the person in control and if they choose a route even though the staff person has addressed negative issues associated with it, that is their prerogative. The staff will also respect that the consumer may succeed. The staff are trained not to “White Knight” or “try to save” consumers from failure. Not only is it a matter of consumer control it is a matter of learing through trial and error- a valuable tool for anyone disabled or not.
The Importance of Language – PACE recognizes the impact of language on all our attitudes. Just as consumer is chosen to remind us all consumers have choice, other words are used or avoided so as to model a way of speaking that respects people with disabilities and does not underestimate or stigmatize them. Some believe that “handicap” is a word developed from days of old when people who had disabilities had little choice to make a living but holding a cap in hand and begging. PACE supporters tend not to use the word so as not to apply that stigma. “People with disabilities” is used as person first language. Words like “Epileptic” reduce a person to their disability and don’t acknowledge the person. Though sometimes very subtle these little messages can adversely affect a person’s feelings about disability in general or having a disability themselves.
More info on Independent Living Philosophy and History of Disability:
Independent Living Philosophy – ILRU Rapid Course
inet – Independent Living Research Utilization Project History of Independent Living by Gina McDonald and Mike Oxford ILRU / NCIL / APRIL: National Training & Technical Assistance Project
The Independent Living Institute – A People’s History of Independent Living
PACE Disability Awareness Manual –(3 sample pages)
Include a way to order and way to use credit card to buy through pay pal. (Sample 3 pages Manual attached to original email.) The cost of the 26 page complete Disabilty Awareness Manual is $10.00 (Please note on page that we send the manual by email pdf and so we need the email they want it sent to (that won’t be added to our mail list)
Will provide alternative formats upon request – such as Word digital copy, Braille, Large Print
Will send US mail delivery upon request and receipt of a mailing address