I had the opportunity to work alongside the endlessly patient and energetic Ruth Stubbs, who described herself as a seating specialist – but I can tell you she is far more than that! She is an enthusiastic advocate for people with disabilities, a staunch supporter of human rights issues, an expert in her field of positioning for people with disabilities, and she is a skilled educator, willingly sharing all of her knowledge and skills for the advancement of the rights of disabled people in South Africa.
It is impossible to express without experiencing first-hand the difference that simply being placed correctly in a wheelchair can make to an individual. Picture if you will an eight-year-old boy who has cerebral palsy affecting his whole body, making him stiff and making it hard for him to lift his head: he lies on his bed curled in a tight ball, which makes his spine curve. Incorrectly placed in his wheelchair he sits instead on his pelvis on the base of his spine, causing pain and eventually resulting in a pressure sore that will take weeks to heal. Because his spine is rounded, he cannot lift his head when he hears his name called, and because nobody puts his lap tray on, his arms are trapped by his side and he cannot feel the sensory ball placed on his lap; his knees are raised above the pommel designed to keep his legs apart and in time it will become impossible to separate his legs to change his nappy and more pressure sores will develop. In this position he cannot feed properly because his whole body is stiff, so staff simply think he doesn’t want the food and they leave him. He loses weight and becomes malnourished and is eventually hospitalised. You may think this is an over-exaggeration but I have seen it. Luckily, however, in this case changes were made, staff were educated and we hope that it never happens again…. the story should be this…..
An eight year old boy with cerebral palsy is positioned correctly in his chair; he sits evenly on his pelvis; his bottom is pulled to the back of his chair so that he can rest comfortably on the cushions; his table is placed on his chair enabling him to participate and play; it raises his arms and shoulders, making it easier for him to raise his head; he smiles when someone calls his name. The chair has been placed on tilt for when he feeds, making it easier and safer for him to swallow. He enjoys the food – especially the yoghurt, so he gains weight, he is healthy and happy and all this from a chair (and of course Ruth Stubbs!).
During my time as a volunteer at Sizanani Children’s Home in Bronkhorstspruit, South Africa I came to know Ruth Stubbs and her work very well. Ruth is a passionate advocate for the rights of people with Disabilities. She is a highly skilled and experienced seating specialist, who believes emphatically in the need for good, individualised seating for people with disabilities. Her absolute belief is that this does not need to be provided through the most expensive equipment on the market, and her extensive skills and knowledge enable her to adapt and customise equipment provided to individuals by the government, in a very bespoke fashion to meet the needs of even the most complex physical cases, whilst incurring minimal costs.
Good, consistent postural management is essential in meeting the needs of people with disabilities. It helps to reduce deterioration in their condition and thus promotes health. It enables people to live more comfortable lives. When someone has a wheelchair that fits and supports them correctly, it can be the gateway to transforming their life. They can be fed or eat more safely, be in a position that allows them to observe and engage with people and the world and thus develop communication skills, it also gives them safe and comfortable access to the outdoors and their local community and reduces some of the physical strains on their carers and families. The value of good seating for someone with a disability cannot be underestimated and Ruth consistently strives for this in each individual case. This seating also needs to be reviewed regularly and Ruth tireless and patiently commits to this.
During the monthly seating intervention clinics at Sizanani that I attended, Ruth always worked with dedication, vision, passion and skill to transform both second hand equipment, and newly prescribed (but completely non-personalised) equipment, into highly personalised seating which met the needs of the individual. This always involved adding and removing sponge and cushions in different places, adjusting the length of supporting straps, considering the tilt of the chair, and the position of foot boxes and whether there was a need for a head extension board or foot board. Where possible she would always take into account the wishes of the individual, and introduced changes slowly over a number of visits where necessary, to enable individuals to slowly and comfortably work towards a new, better, improved seating position, which over time brings long term benefits to their health and wellbeing. During her seating interventions Ruth always had the opportunity to impart her knowledge to staff and / or parents, and to advocate for the reasons behind, and absolute necessity of, good seating positions for people with disabilities. In her passionate belief about this, Ruth always seized these opportunities to diplomatically advocate in the best interests of the individual using the wheelchair. In every case, the changes that she made to wheelchairs resulted in the individual being seated more upright and comfortably supported in a better position.
Ruth has a wealth of knowledge and during these clinic she has also been able to offer advice on how to use wedges pillows and towels to support people in good lying positions, whilst also offering training and advice on the use of standing frames and walking aids.
Her monthly visits offer an invaluable contribution to the general welfare of the residents at the home, and help to support incredibly dedicated staff, who are predominantly skilled and caring but without professional qualification, deliver high quality seating, postural management and care to the residents. As an independent visitor who will always advocate for the rights of those she is visiting, her monthly visits to the various homes that she goes to, also help to ensure that standards and thus quality of care for individuals do not slip.
In previous employment and through working with our day care staff and families she has experience of working with and supporting families with disabled children and family members, with a wide variety of needs. She is committed to offering families invaluable advice and support about services that they are entitled to and will always do her utmost to support individuals in accessing these.
In supporting Ruth to do what she does best through the Paige Project, you would be offering countless children, young people and adults with severe disability, many of whom cannot advocate for themselves, the opportunity of living a happier, more comfortable and healthy, fulfilled life.