Thoughts On Living Independently

Housework is bogging me down again. Several days ago, as I took a breather after cooking, I pondered over all the chores that I had to perform as a routine. No doubt I could manage most of them but they were also wearing me down physically and mentally. Most evenings, I go to bed totally exhausted.

Many, even disabled persons, have the misconception that to practice Independent Living, the disabled person must be able to live by himself, do everything by himself and at the same time be financially independent. There was also the question of whether securing the services of Personal Assistants in the context of Independent Living will make the person lazy.

Independent Living is a about choices and self-determination. It was initially established to support persons with severe physical disabilities to decide on the kind of life they want to live with the support and involvement of government and society. Among others, this was achieved through the services of Personal Assistants helping the disabled person in his daily activities.

The question of laziness does not arise as severely disabled persons do not possess sufficient motor function to perform tasks unaided. Secondly, disabled persons, either through self-oppression or through the prejudices of society, have been expected to perform at par with the non-disabled. This skewed expectation seldom takes into account the limitations of the environment and the capabilities of disabled persons.

I thought I could live independently without assistance. I did, but at a price. After completing all the chores for the day, I have little time left to do anything else that is meaningful. Essentially, I have been pushing myself over the boundaries of my own abilities. A little assistance would have eased the workload immensely and freed up time for me to work on more significant issues. In short, I was tormenting myself with a jaundiced view of how to living independently should be.

I must recognise and accept my disabilities and its limitations and that there is only so much that I am able to accomplish. While it is commendable for me to attempt to live without assistance, there is a need to draw the line on where I should stop in my attempts to push the limits. There must be a fine balance between ambition and capabilities. The importance of one over the other should not be discounted.

It is imperative that I have the desire to push myself to achieve the seemingly impossible goals. My eagerness to prove that I can make it in spite of my disabilities should not compromise my quality of life. Ultimately, it will boil down to me against myself – my desires against my capabilities. One without the other would make my life less meaningful. On the other hand, too much of one or too little of the other could complicate things.

Having understood the wisdom of that, it is only prudent that I rearrange my priorities. There is a need to get assistance to help me with the chores that are taking too much of my time. I want to be freed from those to enable me to do the things that I love and also work on Independent Living projects. One of my neighbours has been helping me voluntarily with some of the housework.

However, assistance such as this must be sustainable and a service that I can rely on in the long run. Surely I cannot expect my neighbour to do all that for me without any kind of renumeration although time and again she had refused to accept it. What about those who do not have kind neighbours such as mine? This is a learning process and a good case study for me to assess how Independent Living can be initiated and adapted to suit Malaysian culture.

(This entry was written several days before I left for Kuala Lumpur last Saturday.)

Author: Peter Tan

Peter Gabriel Tan. Penangite residing in the Klang Valley. Blissfully married to Wuan. A LaSallian through and through. Slave to three cats. Wheelchair user since 1984. End-stage renal disease since 2017. Principal Facilitator at Peter Tan Training specialising in Disability Equality Training. Former columnist of Breaking Barriers with The Borneo Post. This blog chronicles my life, thoughts and opinions. Connect with me on Twitter and Facebook.

3 thoughts on “Thoughts On Living Independently”

  1. Venturing into something new, and big, like this is always a challenge, not least of which is the gauging of one’s acceptable limits. I’m not unhappy to see that you’re acknowledging what help you need and what you don’t need. The objective is your overall wellbeing. I’m sure you’ll find the balance.

    I am learning all the time and his is one of the best lessons that I learnt about myself.

  2. I went through the same process myself, struggling with accepting my physical limits as a quadriplegic. I’ve been fortunate enough to find an aide who understood my needs. This has been enormously helpful in freeing up the energy I have to pursue a fuller quality of life! Moreover, since my disability prevents me from doing certain things around the house, I am much more comfortable too. Good luck and feel free to email me or visit my blog anytime.

    To understand what we can and cannot do is the first step to self-liberation. Took me 20 years to realise this. Still, better be late than never. I would love to hear from you about the disability movement in the US. I am sure it will be an interesting model for us to refer to.

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