People with disability (inclusive definition)

People with disability (inclusive definition)
A needs based model of disability
Definition of disability

Contents

Disability

A needs based model of disability

A disability or a disadvantage

Personal needs and community needs

Community ignorance and social stigma

A functional or dysfunctional community

The disability community

The social labels of disability

"Disability" (Top)
A social label that describes a characteristic of a person that prevents or disables the person's ability to meet his or her needs. The labels "people with disability", "disabled" etc are used as a means to identify a social group that has access to a service that specialises in supporting that group. These labels are generally assigned to a person by some bureaucratic process (Disability Services, Disability support etc) that allows access to the service (See labeling as a social phenomenon). The accepted social labels that were used 40 to 50 years ago, and are considered inappropriate and devaluing these days, reflect the changing social landscape that we live in today. The same thing happens in any social setting, where the use of terminology to describe a social group becomes outdated. Just as fashion reflects the era in which it was fashionable. Language also reflects the society in which it was used. Each new generation creates its own vocabulary. Think about the words that are used to describe "Disability". What meanings do we attach to these words today? What words were used 40 to 50 years ago to describe the same things? How will people in 40 to 50 years time describe the terminology we use today in describing people with high support needs? Will "disability" be a dirty word?

Disability is generally defined by some bureaucratic process as ...

A disability is any continuing condition that restricts everyday activities. The Disability Services Act (1993) defines “disability” as meaning a disability:

which is attributable to an intellectual, psychiatric , cognitive, neurological, sensory or physical impairment or a combination of those impairments;
which is permanent or likely to be permanent;
which may or may not be of a chronic or episodic nature; and
which results in substantially reduced capacity of the person for communication, social interaction, learning or mobility and a need for continuing support services.

Disabilities can result in a person having a substantially reduced capacity for communication, social interaction, learning or mobility and a need for continuing support services in daily life. (http://www.disability.wa.gov.au/aboutdisability/disabilitydefined.html)

The above definitions are based on a medical model, and while appropriate for medical and legal purposes, only highlights (reinforces community perceptions) the fact that people that have a physical or intellectual disability are different from others and therefore maybe treated as sick or deviant (The Origin and Nature of Our Institutional Models) (The Individual and Social Models of Disability) (Psychological and social impact of illness and disability). Deborah Kaplan (The Definition of Disability) has written an interesting paper on the vagaries and various ways disability is used in society. The problem is that most definitions treat the group, rather than the individual.

The social definition refers to society and all things within society. The social definition also has problems in blaming society in not providing the infrastructure etc. in supporting these groups.

"The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society. It recognizes that while some people have physical, sensory, intellectual, or psychological variations, which may sometimes cause individual functional limitation or impairments, these do not have to lead to disability, unless society fails to take account of and include people regardless of their individual differences. The model does not deny that some individual differences lead to individual limitations or impairments, but rather that these are not the cause of individuals being excluded. The origins of the approach can be traced to the 1960s and the disabled people's Civil Rights Movement/human rights movements; the specific term itself emerged from the United Kingdom in the 1980s." (Social model of disability, Wikipedia)

The main purpose of a definition it to explain the meaning so that it can be understood within the context of the structure. An individual/medical definition therefore refers to the person and the science of medicine. A social definition refers to to the person and society, and the relationships between the person and society. A brief search on the WWW will show hundreds of definitions both generalised and more specific. Each definition is used in a specific context which relates to a medical or social setting or situation. A person, for example, may be disadvantaged in one situation, and not disadvantaged in another situation because of the different needs within each situation. One person may be disadvantaged, while another person with a similar disability may not be disadvantaged. It seems to me that there is enough evidence to suggest that both definitions do not work properly in the process of enabling these people to live more normal lives in each community that they wish to be a part of (Disability 10 facts or fallacies?), (Imparato, Andrew J. 1999-06-28. Toward an Inclusive Definition of Disability).

There is much discussion about an individual identity, a social identity, a collective identity, a group identity, racial-cultural identity etc., etc., etc., that is seems that we have lost the plot. By defining people with disability as different, WE ARE TREATING THEM AS DIFFERENT. Have you ever asked a Canadian "What part of America do you come from" ? What has been the reply ? Chances are that it cannot be repeated here. What about the person ? Does it really matter if the person is Canadian, American, African, black, white or orange with blue dots ? What about the person's needs ? How is the person going to fulfill his/her needs ? How is the person disadvantaged in not being able to fulfill those needs ? What roles does the community have in fulfilling the needs of its members ?

Rather than looking at the disability, we should be looking at the needs of the person. The above definitions focus on the disability within the person or society, rather than the person's needs within each community that the person participates in. In most cases the disability may have a small impact on a person's life and the person may not be disadvantaged in other areas. The disability may also have huge implications in all areas of the person's life. If I say to you "This person has a disability", you will need to know what the disability is and how much support the person needs. Does the person have high or low support needs ? What can the person do ? What can't the person do ? You need to know more about the person than his disability so that you can support the person in fulfilling his/her needs. You also need to know about the community and the setting that you are supporting the person in. Are you supporting the person in a home by himself or with others, or in a school, work place or in a recreational setting ? What skill and resources does the person need ? What skills and resources does the community need ?

Disability is also a personal thing. How a person copes with the condition mostly depends on the support from family, friends, neighbors, at the shops, at school or any other community that they are a part of. Whatever Gov. policies, laws etc. are put in place, or the social obligations of the wider community has in accepting people with high support needs, this does not automatically mean that the person becomes a part of that community. In a shopping center, for example, I am temporarily a part of that community and may not have any permanent connections or relationships. If I cannot communicate to the shop assistant, or I cannot read the shop signs, I then become dependent on others to fulfill my needs (to buy some food etc.). If there is no one to help me, or maybe steals my money, or thinks that I am different, I become disadvantaged in not being able to fulfill this need. I may try to get someone to help me or try to get some attention to my situation, but the chances of being seen as a nuisance are great. My own experience in supporting a person with an intellectual disability is testimony to this outcome. He has a limited understanding of money and the value of things that we take for granted. He has no sense of time, and can be very friendly to strangers (and gets aggressive if they do not take time to talk to him). I think of him as being "Streetwise" in the sense of having the some basic skills (strategies) in surviving in the wider community, but lacks the knowledge behind those skills.

I propose to use a more inclusive (community) definition.

The above shows that the disability is not the problem. We all are disabled to some extent in our normal lives, for example, if the power suddenly went out in my home and I can not do anything to fix the problem, I am disadvantaged in that I do not have the skills or resources to fix the power. I may be able to call the neighbor or a service provider to fix the problem, which means that I am no longer disadvantaged. However, I still have that characteristic (that I do not have the skill to fix the power), but I am not disadvantaged by it. If there were no support available to fulfill this need, then I will be disadvantaged in that other needs, preparing meals, washing etc. may not be fulfilled. This may lead to other needs not being met that may result in all sorts of other problems. Even a simple thing as not having a mobile phone is considered as a disability these days. Alternatively, if I wanted to drive in my car to an appointment and can not because the car has broken down, then I am disadvantaged in that I can not get to the appointment, if there is no community service that supports this need. How many times have you sat in front of a blank computer screen ? You are helpless. You need to get to your e-mail. You need to get to your bank account, or the latest stock prices. What do you do ? The computer and the internet are so much a part of the lives of young people these days, and anyone that does not know even how to turn one on is seen as different and misses out on those communities that seem to be a major part of their lives (becomes marginalised). The implication is that people that do not have the skills or resources to fulfill a need, and can not get the support may be seen as different to others (devalued) because those needs are not being filled. A person with a severe intellectual or physical characteristic that disadvantages him/her in their normal activities will need more support in fulfilling those needs. If the person can not get any support within that community to meet a particular need, then that person is disadvantaged in not being able to fulfill the need.

A needs based model of disability: (Top)
Any dialogue in the discourse of people with high support needs and the community, needs to be positioned in the context of the person and the community. What are the needs of the person ? What are the needs of the community ? How can the needs of the person be balanced with the needs of the community ?

Shows the relationships between, 1) the person, 2) the disability, 3) the community.

The above suggests that it is possible for any person to be disadvantaged (devalued) for any reason in any community. Some studies were done with school children a few years ago where the class was divided into groups (Blue eyes Brown eyes). The results clearly showed that people become disadvantaged quite easily. Just as Muslims were targeted a few years ago because they may be terrorists, all Muslims became disadvantaged. The same thing happened to the Jews and any number of other groups of people. The same thing can happen in any community. If I wear my P.J's to work (which has happened in America) I am seen as someone who is different. In some communities a particular characteristic can be an advantage. While I was traveling around the Northern Territory I certainly felt like a second class person in the shops. I spent some time living in an Aboriginal community and it took a while to become accepted as a part of their community.

The above also suggests that new communities are created that are designed around particular needs that are not supported within the wider community. These new communities have the skills and resources necessary to provide for the needs of its members. Disability services, organisations and support groups are communities that provide for the needs of disadvantaged people in society. These communities provide valued roles in society in supporting these groups. Unfortunately, because some of these groups have high complex needs, a community becomes specialised in, and focused on a particular characteristic, rather that the person as a whole, and as a result a person may not receive the support that is most appropriate to his/her needs.

A disability or a disadvantage: (Top)
Any definition that describes a persons ability or disability to fulfill his or her needs is centered around the person. "Disability" is a social label that is used to describe a persons circumstances within society. This label describes a characteristic of the person, Unfortunately a social label can not describe how the person is disadvantaged in fulfilling those needs. Within society we see all sorts of disadvantaged groups. They all have their own niche within government bureaucracy. The unemployed, elderly, children, drug rehabilitation, people with disability, just to name a few, all have their own policies, procedures, criteria for assistance etc. etc. etc. We need special services just to assess the person's eligibility for a service and to sort out the maze of paper work. It can be quite daunting for a person to even know where to begin. Just because I may have a condition that is defined under the Disability Services Act does not automatically mean that I will receive support. I may be disadvantaged in that I do not fit into the criteria (age, weight, income, personal supports, gender, type of disability etc.) of any suitable service, or that the service does not have room and I am put on a waiting list. All groups are disadvantaged to some extent with regard to health care. Do I have private health insurance ? Is my condition classified as elective treatment ? How long do I have to wait for treatment? What are the legal implications if I am over weight or have a some other pre-existing condition or am allergic to some medications etc.

A lack of skills and resources in the community also means that the person may be seen as:

a sick person : the person is treated differently to others
a nuisance : takes up resources that are needed elsewhere
a troublemaker : is always trying to standup for their basic rights
an object of pity : the person can not look after themselves
subhuman or retarded : is not capable of making their own decisions

If fact some members of these groups are often placed in the same settings today (both literally and figuratively) that Goffman, Wolfensberger and others wrote about in the past.

Asylum seekers
Aboriginals
Aged
People with drug and alcohol problems
People with mental illnesses
People with high support needs
Etc.

Sometimes people are separated for their own good and in the best interests of their community ...

they are a harm to themselves
they are a harm to others in their community

The above can happen in any place at any time where the community does not have the skills and resources to look after their needs.

Alternatively, having a disability does not necessarily mean that the person is disadvantaged, sick or even deviant. The Blind and Deaf are examples of communities do not see themselves as disadvantaged. There are also people that are amputees that have their own communities that support each other and are able to live independent and fulfilled lives.

It could be then argued that the concept of "disability" is fundamentally an objective value that is positioned within the social contexts of the social constructions that determine the policy and decision making processes that are a part of the society in which we live. Blindness, for example, in an objective definition based on a measurement determined by some bureaucratic process to assess a person's eligibility or access within that definition. We see people being grouped into various classifications that allow or disallow entry into a service. Barbara M, A, (in Gary L. Albrecht, Katherine D. Seelman, Michael Bury, 2003, Handbook of Disability Studies, P.97) describe the various contexts that the term is used. These may be useful within the various legal, medical, social, intellectual or health arenas within society, but unfortunately, these paradigms cannot measure how the person is disadvantaged in fulfilling his/her needs. For example, I ring an electrician to fix the power and am told that I am not eligible for a subsidy for the service because I do not have a disability, even though I cannot pay ? Whether I have a disability (as defined by a government department) or no disability, the fact is that I am disadvantaged in that I may not have enough to pay for the service.

Personal needs and community needs: (Top)
What happens when the needs of the community outweigh the needs of the person?

Communities have certain needs (access, communication, presence, participation etc) in order to function as a community. When looking at the needs of the person within a community, there is an expectation that the person fits into the social stereotype of the community that he/she wishes to participate in. If I wanted to drive an airplane on the freeway, I wouldn't last long. A particular characteristic may be the way the person dresses or behaves that does not fit into the normal patterns and cultures (institutions) of that community. If I want to be a part of a sport community (or any other community), there is an expectation that I would dress and behave appropriate to my particular role in that community. In a business community (for example) I am expected to wear a suit and tie. If I wear a T-shirt and thongs I may not be accepted unless I have other positively valued characteristics that are more important than the way I dress. A person with an intellectual disability would not be expected to be a part of a business community, unless the person and the community have the skills and resources required for the person to be a part of that community. Sometimes there is a real challenge to find the right community that has the skills and resources to support the person. As a result, new communities are created that accommodate the needs of the person.

Community ignorance and social stigma: (Top)
Any person or group of people that do not share the same characteristics as the majority of the members of a community will be seen as different. A lack of community awareness about the condition, characteristic or circumstance of the person contributes to misplaced assumptions or attitudes about the person. Society has a habit of labelling groups of perple who share some common characteristic as being the same, regardless of any differences that there may be. This happens mainly through ignorance of that characteristic. Just as AIDS sufferers have been marginalised because of a lack of understanding about the condition, people with a memtal illness, dementia or an intellectual disability are all treated and expected to behave a way that devalues their identity. Sometimes these myths are perpetuated by government policy and practice, where community values and cultures do not support these gropus.

... communities are generally very protective,
... communities can become conditioned to behave a certain way,
... they are generally outside the experiences of the other members of the community,
... communities generally cater for the community as a whole, rather than meeting individual needs,
... the community does not have the skills and resources to support these groups,
... there is generally some form of harm, friction or conflict of interests between the members,
... they are seen as a threat to the community,
... its too hard. (See Understanding communities)

A functional or dysfunctional community: (Top)
The current rhetoric regarding a person's ability or disability to function effectively in society completely ignores the functions or roles of the various communities that are a part of the process. There is very little written about the health of each community that a person wishes to participate in. There is some discussion about how a community or society can be modified to accommodate the needs of people with disability. But what about the needs of the community? Just as a person may need to be supported in a community, a community also needs to be ale to function properly in order to support the person. There are any number of things that can happen within a community that results in a community being unable to function property (see Dysfunctional communities). Supporting a person in a community usually involves a government agency, social service or organisation, and the way the agency service or organisation interacts within that community can have a positive or a negative impact on that community. How is the community modified, what stake holders are involved in the process and do they feel a part of the process? What other issues and agendas of the community have an impact on the process and the community? What other communities are involved in the process?

The current social policy has been to close the institutions (the buildings and social constructions of the buildings), and relocate the people that where supported in those institutions into community settings. What has actually been achieved by this process? I would argue "very little". There is only a small group of people with disability that are able to be supported within each community that they wish to be a part of. People with low to medium support needs have a greater chance of participating in and being a part of that community. People with high support needs are less likely to have those opportunities. As the populations of these groups increase within a community, more community resources are needed, which means that there are less resources to provide for the other needs of the community. It can be seen that whatever the government policy or practice is, in defining the disability and the processes that are put in place to support a person in a new setting, that person does not automatically become a part of that community.

I remember a saying ... "You can lead a horse to water, but you can't make it drink". Ultimately, it is up to the community to decide if a person is or is not accepted into that community. SRV is an important strategy in any program designed to develop valued experiences and relationships within a community. The greatest challenge is to find the most appropriate community that suits the needs of the person as well as the needs of the community.

The disability community: (Top)
The disability community is no different to any other minority group in society. They heve to fight for their rights to participate in society. Just as the Muslams, the aged, the unemployed and other groups that do not share the same characteristicts as the majority group, people with disability have to lobby for recognition of their status within socity. They may have a legatimate role as defined by government policy and process within society, however the way these groups are treated by society may be quite different.

Within the disability community we see groups or communities of people that have a specific charasteristic or disability. We see people with an intellectual disability or illness, people with a physical disability (Cerebral Palsy, Blind, Deaf, Spina Bifida etc) that all have different needs. These communities can not support themselves and look to the wider community (society) for funding, donations, volunteers, as well as acceptance in the opportunity to live and participate in normal community activities within society.

The social labels of disability: (Top)
Spastic was a legitimate medical term that described a condition that a person suffered from. Other terms that were used within the medical professional to describe a characteristic of a person or group were largely used within the medical profession as a shorthand way to describe the group. Over a period of time these expressions became accepted and widely used within society. Various accounts of the way various groups are labelled have often been misinterpreted or skewed to support a particular idea or agenda of the person writing the account (see Conceptions of idiocy in colonial Massachusetts, Journal of Social History, Summer, 2002 by Parnel Wickham). Other accounts focus on a particular theme or situation without putting the account into the proper context. We are all guilty in this respect and there has been a great deal of discussion about the relevance and accuracy of historical research and documentation. The expression "The eye sees what it wants to see" (unknown) is as true now as it was then (See also Social constructionism - Wikipedia, the free encyclopedia).