independent living - a personal reflection

Some people have mistaken ideas about independent living - they think it means being on your own, not being dependent or asking for help. My soon to be ex complained bitterly at one point - asking me that he thought I had wanted to be independent, so why did I still want to be dependent on him for support. That hurt. why did I think that after nearly 20 years of being together, there shouldnt be such statements. Part of it is my fault, one should never assume that the people nearest and dearest would share the same ideas unless you bring with you on the journey of knowledge. And especially when there are already communication problems.

Independent living means having choice about how you want to live your life and not to mean that you do not need or want support. Here is a distinction -

Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.: Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own.
    - Independent Living Institute

The trouble with  independent living -wanting choice can be construed as rejection. And able bodied are so easy to take offence, they worry about being intrusive etc. The trouble is with a close relative or a spouse is that they might not uderstand and then they withdraw in a huff and you lose a support which could be very helpful or even vital. I'd like to say that if they were truly close they would support you even if they don't understand. Unfortunately enough in my case, I do not find it to be true. My own family is very supportive but if they are over 2000 miles away, there is not a lot they can do and culturally as well as geographically they are over there on the other side almost.

I think it is not so easy to have the choice to come and go as easily as with able bodied people. Support systems can bind and strongly hold you where you might not want to stay. I know  that leaving a country, a marriage and family life as I knew it was doubly hard because i was not sure at having any safety nets and then you leave something, the supports that you got used to might not be there.

A disabled person is not just disabled, there is also gender, ethinicity, nationality in consideration. As an expatriate wife, I did not put safety nets in place should I leave the cosy enclave. being a woman is vulnerable, being a stranger is vulnerable,  being a foreign alien is vulnerable  and  being all that adds up to a much higer vulnerability.  Independent living should mean also that one is also allowed the choice of being  Ulysses, sailing perilously on the high sea and not always delegated to being Penelope left behind to weave and wait. But in stories of high adventures, those who are disabled are the Captain Hooks and Long John Silver,  maybe the good ones  drown  and go down with the sea  much earlier on.

I think I am rambling here. For me,  independent living would mean having my  own  inclusive design kitchen  and bathroom where help can be summoned when light bulbs blow  and  helping me  in and out of bed when  I am  more fragile  and decrepit  than what I am now.  Without  needing to go to a home or being told I have to get up  or go to bed at 8pm  by carers to fit their routines.

And being able to get a job without worrying about whether there is enough space for your wheelchair or whether there is an accessible toilet. Knowing that there is transport to get to work, and there is a parking space close enough for your car without some idiot parking thereand when you go on holiday, you are not reduced to only going places where they dont have steps and eating only in restaurants that have access. I can go on and on but I won't.