‘Wine, Bed and Roses’
A paper written by Phyllis Rappaport. Copyright 1998.
I am sitting in my new electric double bed. It is Friday 3rd April. I am sipping a glass of red wine with cheese and biscuits. The roses are coming. The coffee is here and with Pavorotti singing masterly in the background. My heaven is made to lie and stretch in all this space of a double bed. My head lolls back among my pillows, a grandiose sigh slips slowly past my lips!
Such indulgence may first appear extravagant. I have been waiting the best part of a year to get this electric bed through PADP, (Program & Appliances for Disabled People). The problem was that the present guidelines of PADP did not allow the program to purchase a bed of this kind, in a double size of my choice. They could fund single or three-quarter size beds but not the double. The double size in such a bed was not considered to be basic equipment that would aid or enhance my mobility. Even though I am a married woman. I have been married for some thirty years.
This lineal attitude doesn’t allow disabled people as myself to be perceived and seen as adult sexual intelligent free choosing people who are living in stable marital relationships. Yet society perceives and credits non-disabled people living in society with this status which belongs to being a whole Human being. Relationships are intrinsic to that humanity and are part of the humanness in Human society who need physical and emotional contact with each other for quality life and survival.
When items of equipment are installed or advice given in the home of a person with a disability, the needs and feelings of the person, who requires the assistance, should be given complete consideration. The home of a person with a disability is not a hospital or a setting for one merely because specialist technical equipment is required in the home by the person with the disability to aid and enhance his or her mobility.
The needs and feelings of the family of the person with a disability should be taken into account as individuals and also in conjunction to the relationship of the person with a disability. The human cost for me and my case with the bed was that I felt ‘publicly stripped’ of my self image and my identity and status of a married woman when I had to publicly explain why I wanted and needed a double size in an electrically operated bed.
My husband is my carer and in both these roles he suffered from the ‘public exposure’ of our lives and the inconvenience and stresses the additional time and ‘labour’ it took in getting the bed to the coalface. Married or not, the size of bed should have been my own free choice. I consider the Health Professionals did not give to me the respect and rights that they would have accorded to a non-disabled married woman.
A bed is a much more personalised space for a person with a disability, than even a wheelchair, and that personal space may be shared with another person, who may or may not be the carer/spouse/partner of the person with a disability. It must be remembered that people with disabilities are not asexual people. Sexual identity can help define personality and the choice in size and style of bed can be a manifestation of how we wish to portray ourselves to the outside world. It is to be recognised that this self-identity is an important psychological factor in good mental health for all of society not just the disabled community.
In my case the price of the bed wasn’t a great deal more between the three-quarter and the double size. It seemed to be systemic guideline that the PADP Program felt they could not alter. Was it because that change in the guidelines would inevitably bring about a need by the Health Sector to perceive and seen people with disabilities in a whole new light? Oh! They are equal to us now. They are really the same as us. They want and have different sizes in beds. They are sexually active people and have partners as anyone else does in ‘normal’ society. In other words, by this gauge, we, people with disabilities, are normal.
The issues that were highlighted from my case were those of education and training of health professional and nursing staff on the awareness of the life experiences and needs of people with disabilities in the home-living situation. To see and treat us as real and whole people, for that is what we are, real people with real feelings and real and whole needs.
Also I see the importance on the inclusion of family members, spouses and friends of disabled people and to consider them always, as essential and integral parts of that person’s lifestyle. If health and nursing practitioners can begin to widen their thinking to gain a more holistic understanding of the needs of people with all disabilities, finally some real change can be brought about in the health sector. We may then see a new model-of-thinking of disability or difference as integral to us all extending beyond the medical model and incorporating all aspects and facets of living as complete human beings.
Each one of us needs to be recognised as human beings with intelligence, talents, and gifts to give and receive from others. If this recognition does not take place then our very state of being is invalidated. We all need to be recognised as people. We have to recognise humanness in ageing, disability colour or ethnic and religious difference.
How do we do this? I believe we can do this by thinking beyond our perceptions of other people. We as a society have to lose our fear of difference in people. Whether that difference manifests by a physical or intellectual disability. A colour or religious or even a difference in class as defined by Man. I believe that the inability of PADP to alter, modernise and equalise the Program’s guidelines was in this ‘fear of difference’. The fear of an equality for all of us that should encompass all people in society.
If the Health Professionals and the Program ‘Makers’ turned around their thinking of People with Disabilities as being equal in the eyes of society, as people standing, sitting, alongside these other people with professions, in expertisms. This would quickly require a new ideology for sharing of ideas and experiences between these two sets of people who are now equal without superiority over the other.
People who have disabilities have a wealth of experience to share with those in society who are not disabled. It is only by sharing and giving out to other people that we can receive experiences and knowledge that will enlighten our thinking.
The disabled and the non-disabled would then perceive and see each other with the same eye. There would be no need to hold expertisms to us as pinnacles on high, but rather, there would be an opportunity and need to give and gather ideas for improving and extending lives of all of us irrespective of disability or ability.
This will not be as difficult, as it first seems, if we can stop judging the interior to be what the exterior appears to be. This is a step towards letting go our perceptions and assumptions of each other and seeing, ourselves and others, with a new in-sight.
As a British writer, Simon Brissenden, as envisaged for people with disabilities for true holistic independence, he writes:
“The point is that independent
People who have control
Over their lives, not that they
Perform every task themselves.
Independence is not linked
To the physical or intellectual
Capacity to care for oneself
Without assistance; independence
Is created by having assistance
When and how one requires it.”
In Abstract Volume 2, Issue 1, 30th March 1998
This statement is therefore closely linked to and applies to any Professional help inside the home of a person with a disability and pertains to Freedom of Choice as being a major factor of true independence.