The Challenges of being Alone and Disabled

People living with disabilities face a rather difficult life as compared to everyone else. They have to exist against all odds and it becomes even harder when there is no one to help them. No one to help them in the bathroom, kitchen cabinets have only been constructed to suit the undisabled and not all buildings are user friendly for them.

Physically handicapped people… assuming little or no use of legs or feet, particularly, since paraplegia springs to mind… very often have difficulties rising from bed, getting into their chair, dressing below the waist, moving from chair to toilet and back (and wiping themselves before returning), reaching for any items on or above standard-height vanities and kitchen cabinets and above centerline in refrigerators, finding and using common furniture such as couches and recliners, getting through house doors (especially closing doors behind them), getting from door to parking lot over curbs, getting from chair to vehicle (sometimes riding in their own chair in a specially-equipped van), driving, exiting their vehicle (usually but not always made easier by a rear-exit ramp), getting from parking lot into many institutions or places of business over curbs and up steps and over thresholds, reaching over standard-height counters, reaching higher grocery-store shelves and cooler cases, fueling their vehicles at self-serve stations, getting around in narrow business aisles (especially when “normally-abled” people have parked their shopping carts in the middle of the aisle and are jabbering to someone on a cellphone), traveling by any form of mass transit (bus, train, airplane), passing through metal detectors, and traversing any sort of staircases or (even short) vertical blockades (curbs, steps, et al) in general, using public restrooms, eating in bench-only or counter-only diners, using any sort of conventional weighing scales, traveling on any unpaved surface (sand, gravel, grass, dirt, mud, etc).

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People with disability would like to have children just like everybody else but it is hard for them when they are alone. Women with disability have to face the wrath of “caring” people for becoming pregnant.

Normal physical effects of pregnancy can affect a woman’s disability. The impact of bodily changes is dependent on the specific type of disability and the individual woman. For example, the weight gain and altered body habitus associated with pregnancy can influence a woman’s mobility, ability to transfer, and her overall independence. Early on, I figured I would simply adapt to these changes and didn’t anticipate them to be problematic. Later, I experienced serious discomfort and skin integrity compromise sitting in my wheelchair due to the changes in my weight distribution. This necessitated that I obtain a seat cushion designed to distribute pressure more evenly; the downside was that this cushion made lower body dressing difficult for me. Transferring in and out of my wheelchair has become progressively more difficult. The physical changes of pregnancy have been substantial, and have affected my physical functioning much more than I had anticipated.

I recently read an article online about an increase in the number of pregnancies among women with disabilities. Most striking were the comments submitted by readers. Most commenters described women with disabilities are “selfish” for having children, and assumed women with disabilities were receiving financial assistance from the government. Women with disabilities and their children were judged to be a burden on society. Several readers expressed the view that women with disabilities could not properly care for children, and should not reproduce due to the risk of passing on disabilities with a genetic component. These attitudes are pervasive in our society, although less often so brazenly expressed without the perceived anonymity of the Internet. In my daily life, such attitudes have played out more subtly. No one has asked me directly how I’m going to take care of my baby, but that question has been asked to my friends and family. Recently an acquaintance made a comment implying that I will have difficulty keeping up with my child from my wheelchair as he grows into a toddler.

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People with disability have it rough especially if they are the bread winners in their household. For men it is even worse since their ego is wounded. They feel bad when there is no extra help and their wives have to bear all the financial burdens and the kids can’t have the best.

The unemployment statistics for people with disabilities are staggering. Things like physical challenges, unpredictability, transportation and fear of losing much needed benefits play into this. My husband is paralyzed from the chest down because of a spinal cord injury sustained when he was a teenager. There have been times in his life he has worked full-time. Since we’ve been married, twice he has worked part-time, and one of those times, we ended up losing so much benefits-wise, that we ended up in a financial hole.

I am a career woman, I always have been. So, it makes sense for me to be the breadwinner. We have had some tight times, but thankfully we’ve always had what we needed. There is tension when there isn’t enough to pay the bills, though. And there is guilt and shame, for both of us. My husband feels like he’s not being the provider he should be as a husband. I feel like I’ll never be able to be the wife I want to be, and make enough money for us to live at the level that makes us happy. Add the dream of having children to the mix and that’s where it gets really complicated, financially.

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