As we grow up, most of us aspire to be independent of our parents and family. We seek greater autonomy and the freedom to express who we are. We may want to live on our own and choose for ourselves how we want to live our life without having to rely on others. Yet, I wonder, is living independently a possibility for disabled people such as myself?
As a disabled boy growing up attending a mainstream school, I imagined that, one day, I would live on my own, or form my own family. However, when, in addition to my physical impairment, I acquired a visual impairment, I started losing hope that I would ever live independently. Yet today, after involving myself in the disability rights field, I once again have hope that some day I will live independently because I have learned that there is another way of looking at independent living that challenges the conventional view.
But what is the popular understanding of the idea of “living independently”? Were I to ask people what they understood by “independent living”, many would probably say that it meant living on your own without depending on anybody. Some would also emphasise the fact that independent living means “doing everything by yourself”. This conventional view of independent living is the one I was brought up with. I therefore believed that, in my current position, this was an impossibility as I cannot do everything on my own. Of course, there are many things that I can do on my own, but cooking and cleaning are not among them.
On the other hand, is living independently about “doing things on your own”, or does it mean something more important than that? To answer that question, I asked Rita Vella, president of the Muscular Dystrophy Group, how she and her husband, Kevin (who also has muscular dystrophy), understand the term “independent living”.
In her own words, Rita says: “We believe that being independent doesn’t mean you live at home on your own, but that you have choices as to what you want to do – even if we need the help of someone else to help us to do some things. As you well know, we do not and can never live alone, but we still feel quite independent because we have choices.”
Here, Rita makes an important point: independent living is not about doing things on your own, but having a choice about what you do. For Rita, the fact that she and her husband require help in their daily lives is not that important, as long as they have a choice. While conceding that she and her husband Kevin cannot survive on their own, the fact that they have the necessary support to fulfil their wishes and aspirations and to decide on how to live their lives is what
Rita again: “We feel quite independent. We choose what to wear, what we want to cook, what to eat, where to go, what time we sleep or wake up, and other things.”
At face value, such a view of independent living appears to contradict conventional views of independence, which emphasise “doing” over “choosing”. However, if you think about it, people want to live independently because they want to choose how they live their lives themselves. Indeed, this is what independent living is all about. It’s not about “doing things on your own” but more about determining your own life.
Thankfully, today, disabled people are finding greater support to continue living independently and remaining in the community. In spite of our limited human resources as a country, agencies such as Agenzija Sapport* do their utmost to provide disabled people with the necessary support to live independently.
If physically disabled people such as myself have to face the challenge of not being able to ‘do’ things for ourselves and are thus considered incapable of living independently, people with an intellectual impairment are (almost without exception) considered incapable of deciding for themselves, and therefore also incapable of living independently.
However, we must not forget that while there is growing acceptance of the possibility of individuals with sensory or physical impairments to live independently, the same cannot be said about people with an intellectual impairment, still referred to by some as “angels”, who many deem universally incapable of taking care of themselves, let alone living independently.
A report prepared by a number of people with intellectual disability forming part of the KNPD Consultative Committee** reveals that people with an intellectual impairment want to have more choices in their life and have more of a say in decisions that affect their lives. Even if they recognise that they need help to make certain decisions, they want service providers to listen to what they have to say. They also want to live the way they want to. Even if the general public think that this is an unattainable goal, the fact is that, if provided with the proper support to live independently and taught independent living skills, there is no reason why people with intellectual disability cannot make choices about how they want to live their lives.
The fact that, today, disabled people with different impairments have the opportunity to express their wishes and aspirations and the opportunity to choose the way they live on their own terms is certainly a positive step. Indeed, it is a good thing that the structure of the institution is being abandoned in favour of more community-based homes. However, it must be remembered that while we might have stopped investing in large-scale institutions, residential homes may still operate using institutional-thinking, that is, where all the control is in the hands of the service providers and disabled people have no say in the decisions that, ultimately, affect their own quality of life.
We, disabled people, have the right to a quality of life that respects our dignity and this is what makes us strive towards supported independent living in the community as a life-choice – this is where we want to belong. It is a human right that we are convinced will no longer remain just a mere dream, thanks to the ratification of the CRPD UN 2006***, Article 19 of which sets out this right.
As I conclude this article, I look forward with hope to my dream of living independently becoming a reality in the near future. Indeed, I also hope that living independently will one day become possible for every disabled person – including those with the most severe physical and/or intellectual impairments.
References
*More information about Agenzija Sapport and the services it offers can be found on its website http://fsws.gov.mt/en/sapport/Pages/social-work-services.aspx
** Deguara M., Jelassi O., Micallef B. and Callus A. (2012), How we like to live when we have the chance. British Journal of Learning Disabilities, Vol. 40: 123-127.
*** UN 2006, UN Convention Rights Persons with Disabilities, Article 19: Living independently and being included in the community. URL: http://www.un.org/disabilities/default.asp?id=279
Mr Cardona is an Assistant Manager at the Kummissjoni Nazzjonali Persuni b'Dizabilità
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This article forms part of a project carried out by the KNPD entitled Inclusion, Participation, Accessibility: Cornerstones for Personal Fulfilment, which is supported by the EU Programme for Employment and Social Solidarity – PROGRESS (2007-2013). For more information see http://ec.europa.eu/progress