The Viability of Families of Persons with Disabilities: What Experience Teaches Us

Dear Readers,

I want to ask you all a very important question. Which family is the better family? On one hand, Trenton’s family asks me what I want for Christmas, the grandmother being the one who asked, and on the other hand, my dad tells me that Trenton would have to purchase his own plane ticket in order to visit me and him in Florida. Which family is better? The one who manipulates you and tells you that your boyfriend isn’t welcome? Or the family that asks you what you want for the holidays? Which is better?

Which family advocated for the person with the disability’s needs? The one who found their daughter incompetent because of their abuse or the one who managed to nurture their son’s interest in technology? The one who didn’t want to change HIS phone plan because “I’m the father, I’m in charge”? Or the family who openly accepted their son’s blindness, bought him a talking cell phone, and allowed him to have more minutes? You guessed it, Trenton’s. All these questions are not only to provoke thought, but to make you think about what family truly is for someone with a disability.

I want to say that my fiance’s family has been so supportive more so than my own, so much so that a surprise is in the works for the holidays. My family? Forget them. They won’t welcome my own fiance with open arms, and I can’t get this out of my head. The same father who married a mother with a codependent sister! The same father who married a woman because they both shared the love of rockets and engineering. Well, call it social engineering if you’d like, but this is the same father who demanded the password to a MySpace account while I was in the early twenties! Old enough to drink, but not only incompetent, but not “competent” enough to make choices about social media. This is the same set of parents who went ahead and had two younger siblings who, for all intent and purpose, I don’t speak with. They will likely be in charge of medical decisions for my father and mother, both at risk for stroke and nursing home care as a result of ossteoperosis, which is a common problem with women in their sixties and older. My grandmother, smart as she is, prepared for this by making her house handicapped accessible. The thing is she won’t be able to access transportation in order to access her healthcare if she doesn’t have someone to drive her in a handicapped accessible van, if that ever were to happen. The same goes for my mom. My mom’s home is located in a golf course community, and while some neighbors had a huge driveway built in to accommodate their ailing Nana, my mother doesn’t have that luxury or accommodation. As for me, I’m in a better position than both mom and grandmother because I live in a place where the second oldest independent living center is located. Atlantis Community Center is amazingly awesome and they help Trenton and myself with housing, and they have a daily living center and a financial planner and all that. But what makes them special is the founding of their center. Adapt, which is a group that advocates for transit for persons with disabilities, was one of the foremost instruments in making buses accessible in denver. One of its members was arrested 30 times or so because of civil disobedience, but this lady proudly displays her clippings in the museum at Atlantis Community Center. There are other members I’m sure who’ve been to jail multiple times, but the jail visits paid off because now our buses are accessible and also talk. Yes, our buses talk! If my mother took the time to ride a bus in Denver, she’d see how she could easily get off a bus. My mother is sighted, but if she needed to, she could use a wheelchair on said buses. And the stations are located almost everywhere, and within a quarter of a mile from us. Trenton and I live in a location that serves us and the surrounding community. Our buses have wheelchair ramps and lifts, so if a seventy-year-old with bone loss wanted to board the bus, she could. She could easily have the ramp lowered for her, and the driver would gladly put hr in the front. Disabled passnegers should always ride in front in my humble opinion because of safety reasons. I was taught this while using Brevard County’s SCAT bus system. It used to be called Coast Area Transit System. Now, it’s Space Coast Area Transit so far as I know. But my mother would have a much easier time in Denver than in Brevard County in Titusville. There is, for one, no buses there. Second, curb cuts being the only other thing accessible, she’d have to have a van or car she could drive. There’s also a disconnect in care for disabled people in Titusville. Nursing facilities or skilled nursing homes are almost the top of the list of “cure alls” for the elderly in Florida. This is not a good thing because nursing homes can be very depressing and a lot of the patients are heavily medicated for the nurses’ benefit sometimes.

Why, then, do I write this? Seems it is lost on my parents why employment is almost not viable. I cannot get a job that is meaningful anywhere in the country. Why? Well, I have three words for you: we get fired. And not because we disabled people do anything bad. It’s because we’re disabled we get fired.

I’ll use a couple small anecdotes to prove my point. Katy, age 30, is currently working a grueling customer service job. Who knows how long this will be because her job requires her to get donations from others, beg and plead professionally in the nicest possible way, and answer phones, etc. Katy lives in a big city, so she has access to transportation. However, she has to worry about people and her anxiety. The only job open to Katy is her anxiety. (I’m not using this woman’s full name for privacy reasons.)

Because of her blindness, Katy needs JAWS to interact with the software she uses to track stats, call people, etc. Customer service is one of the highest in demand markest, but Katy trained for this so she could pay her bills. Only she got training because DVR in Colorado along with an auxiliary agency recommended her for a position. Besides her blindness, Katy gets spent easily because of anxiety. She has to deal with people yelling at her on the phone, telling her to “Put me on the no call list” and possibly cussing her out. Of course, a machine makes all the phone calls, she told me in a phone conversation.

Katy’s employment history is anything but pretty. She worked at a restaurant, but was underemployed because of her disability. Now, she’s overworked, overdone, tired every day, and spent. My heart goes out to the workers who have to face this.

Being employed has its drawbacks as well. There was a man called Larry who was employed, but he said that he barely got a raise. My own caregiver barely got a raise while working with myself and Trenton as our primary care provider. She’s been great with us so far, but we really wish she was paid better to do the work.

Next thing about employment I want to cover is how short the job can be for a blind person. My ex and best friend Blake only had a job for three days before he was let go for safety concerns. There are too many Blakes out there to count. My buddy Joey may find it hard to get a job after college, indeed most millennials find it hard. But a disability compounds the issue greatly. Joey could be asked, for instance, to show a driver’s license and not a state of whatever ID card. Joey can’t drive, so a license is a barrier to employment because driving is not the essential part of the job. Dr. Arielle Silverman, who does extensive study of blind people and training and such, has done lots of research study which I’m proud to say I’m part of. I feel that helping Dr. Silverman out is essential to others learning about how big this problem is.

I think what Silverman’s literature and papers on blindness can show is the following: how big is the problem, what is the problem, and what can be done to solve the problem. Most of the unemployed blind, however, come from unsupportive families, something I don’t know if there’s a study on or not.

Employment should not be a ticket to competence. Due to the national economic crisis and my overqualification for a choral job upon receipt of a university degree, I should not have to abide by any judge’s order.

My family is clearly not the family I want to say I come from. Joey once told me his parents wouldn’t even be that bad. His mom, thank God, told him to apologize for the premature breakup, but things have gotten better between us. As my family wouldn’t have accepted any color but white, any religion but Catholic, any marriage but a marriage of convenience, I’m seriously done with them. I’m done. What’s sad is that they treated my dear love like a pile of crap. Just because he doesn’t have a job doesn’t mean he can’t emotionally support me. I’m supported as much as I can be, and in the economic crisis, I can’t get a meaningful job that is ripe with upward mobility and professional compensation. My family should be a loving group of people who listen to the weakest, not the strongest member. I think it would help if we had more literature on how family support and the right kind of outside agency support can help a person’s chances of success.

Author: denverqueen

My name is Beth. I'm blind from birth and enjoy the blogging atmosphere. I am a creative person, a musician, a writer, etc. This is me. Take it or leave it.

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