Future-Thinking in Social Support Systems

Updated: Oct 31, 2021

I recently watched House of Cards and found out that there is an old, private swimming pool underneath the White House. In fact, the pool was installed in 1933 following a fundraising campaign to install it for President Franklin D. Roosevelt, a wheelchair user who was paralysed from the waist down following an illness in 1921, and who swam regularly for therapeutic and health reasons. Swimming is one of the few types of exercise I can do – I love to swim and feel completely free in the water, but there is limited access to opportunities to swim here in Sweden as a wheelchair user. I wondered if I would have to become the President of the United States to be able to swim!


The first problem is the general lack of adapted and accessible swimming pools. This problem was exacerbated during the COVID-19 pandemic, as the accessible pool I usually go to was closed, and other pools had strict maximum capacities and no option to book times – which meant queuing outside, often in freezing temperatures! Even now that restrictions have been lifted in Sweden, in order to use the accessible pool I used before the pandemic a medical referral is required. I will then get placed in a queue, my position depending on how urgent they deem my situation. In the meantime therefore my only option is using another pool, and without an adapted pool I need two assistants to help me – which makes me dependent on family and friends for help as the social system won’t provide an assistant for swimming.


This is a major problem with the social system. Exercise has multiple mental and physical health benefits and is needed for everyone, either with or without disability, to live a healthy and fulfilling life – to which everybody has a right. However, the social system only provides for exercise if it is considered “rehabilitation”, for example from illness or injury. As such, I do not qualify for support.


One of the most problematic ways of speaking about persons with disabilities is to contrast a person with disability with a “healthy” person. Health status is something independent of disability – a person with disability can be perfectly healthy, and a person without disability can be incredibly unhealthy! The WHO recommends 150-300 minutes of moderate-intensity aerobic activity every week for all adults, with or without disability, in order to live a healthy lifestyle. But to realistically achieve this, many persons with disabilities need support.


This is a failure of a social support system that is focused on short-term cost management rather than long-term planning. In the long-term, inadequate support for allowing persons with disabilities to maintain a healthy lifestyle is likely to cause even more problems and greater costs for the system itself. Without being able to exercise and improve health, people are at greater risk of further illness – and once this happens, the system must provide more intensive care. Instead of having a few extra hours a week for an assistant now, there may be the need for multiple, full-time assistants and carers in the future should a person’s health situation deteriorate.


This point was raised in an interesting case in Sweden that was brought to the Committee on the Rights of Persons with Disabilities in 2012 (CRPD/C/7/D/3/2011, 2012). A woman with a chronic connective tissue disorder applied for planning permission to build an indoor pool in her home, to facilitate the hydrotherapy that she needed to improve her quality of life, as she was unable to leave her home. The local municipality rejected the plans due to them citing local planning regulations which prevented the building of the pool.


The case was escalated through the Swedish courts, eventually reaching the Convention on the Rights of Persons with Disabilities (CRPD), which found that that the woman’s rights under the 2006 Convention had been violated, stating that “the decisions of the domestic authorities to refuse a departure from the development plan in order to allow the building of the hydrotherapy pool were disproportionate and produced a discriminatory effect that adversely affected the author’s access, as a person with disability, to the health care and rehabilitation required for her specific health condition.” (CRPD/C/7/D/3/2011, 2012:13) They also concluded that “the State party is under an obligation to take steps to prevent similar violations in the future, including by ensuring that its legislation and the manner in which it is applied by domestic courts is consistent with the State party’s obligations to ensure that legislation does not have the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise of any right for persons with disabilities on an equal basis with others.” (Ibid.)


A fragmented, short-term thinking social support system concerned with present budgets, as I discussed in a previous blog post on 11th January this year “Crushed in the Wheels of the Administrative Machine”, fails to adequately support the lives of persons with disabilities adequately and holistically.


The failure to support the rights of persons with disabilities comprehensively, including the right to a healthy lifestyle, causes harm not only to persons with disabilities, but also to the systems itself and society as a whole in the long-term.


Chavia Ali

#chaviaali


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