The Catch 22 of Disabled Dependence

When I wrote about eugenics, one of the commentators said something along the lines that their decision of whether or not to bring a child to term would depend on their ability to be independent.

I understand the impulse. As parents, you take care of a child with the expectation that one day, they won’t need you anymore. Yes, they will always be your baby and hopefully you will always be there for them, but still you expect that one day they will be on their own.

Facing the prospect of being a primary caregiver for the rest or your or your child’s life can be daunting and scary. The problem is that the ability to be “independent” is not something that can be determined in utero. It’s not even something that can be conclusively determined during the child’s development.

Take functioning labels for example. Many autistic adults actively campaign against functioning labels for autism because they are not accurate. A person may present as high or low functioning in different moments throughout their development and even throughout the day. There is a great article where two separate people are described: one a well-organized independent person who is able to effectively care for themselves, and another is described in the middle of what some would call a tantrum. Where they are overwhelmed with sensory input and unable to communicate let alone function. The two people are later revealed to be the same person just at different times.

Another problem with this reasoning, is that ability to be independent is not even something that is dependent on the person in question. People with disabilities are artificially kept dependent on others in different ways.

One of the first major ways that disabled people are kept from being able to attain independence is through financial restrictions. This manifests itself in all sorts of ways. Disability payments for example are explicitly meant to help people who have disabilities exist independently, and yet, they don’t provide enough in most cases to actually cover the cost of housing, food, and other necessities.

As a result, many of us are forced to live with roommates or to live with relatives. This in turn creates the perception that we’re unable to live on our own, when in truth it’s that we are not allowed to even try.

The process to get on disability is difficult, with several hoops to jump through. Most people end up having to go through a lengthy appeals process only at the end of which they finally qualify. The time it takes to process disability can be prohibitive. When I went through the process, it took nearly a year and a half. It would have been longer too, had they not balked at the size of my medical fire before the final tribunal. This means that you are completely dependent on others to survive while you wait to be approved.

Not everyone who is disabled is on disability, but the job prospects are difficult to find for people who are restricted from fully integrating into society. If you have mobility issues for example, you are automatically disqualified from any job that involves stairs. People who are deaf are disqualified from jobs that involve the use of the phone if their employer is unwilling to provide assistive technology.

In some states, it is actually legal to pay disabled people less than minimum wage. Since these jobs can sometimes be the only ones available to those of us with visible disabilities, there is sometimes little choice in whether or not to accept the job on those insulting terms.

Working for an hourly wage, can mean that people with chronic illnesses are unable to make ends meet when they are flaring, since they cannot go to work. If you miss enough, your employer can fire you and you are once again left without a means of income.

The social perception that disabled people are always dependent on others, can actually create a situation in which the perception becomes a self-fulfilling prophecy. One way this happens is in the ways stores treat accessibility.

I recently had to go to the mall to take care of some errands. Unfortunately, the places I needed to visit were on opposite ends of one another, meaning it would involve a lot of walking. Most malls provide wheelchairs for patrons who need them. However, the wheelchairs provided operate on the assumption that the disabled patron will have someone else with them. Trying to operate it on your own is difficult and defeats the purpose of using the device.

The technology exists to make it possible for stores to provide mobility assistance to individuals on their own. For example, many grocery stores have electric scooters that can be used while shopping.

While grocery stores may do well with mobility assistance, they create barriers for those who are blind. The labels on items, the information about what is in what aisle all depend on a person to have sight. Still, many people with visual disabilities can learn to navigate stores with time, however, in order to increase revenue grocery stores will often change around how they stock things. This means that a person has to rely on outside assistance continuously.

It wouldn’t be that difficult, in the age of smartphones, to create an app that could help read out labels or even provide a working interactive map of the store.

There are many assistive devices out there that would make it easier for people with various disabilities to integrate more into society. Things like electric wheelchairs and scooters, like service dogs, like things to help you with not having to bend, and a variety of other official and unofficial hacks to make navigating easier. Many of these things however are prohibitively expensive. This is also true of homes that are more accessible, that have the space for a wheelchair user to move around the space, or which lack stairs or otherwise. Many of the things that would help us are just out of reach.

The appearance that disabled people are dependents for the rest of their lives, is an illusion created by a system that has no interest in making itself accessible.

What about people who do require help from home care workers?

These too should be allowed to live independent lives. Home care workers should be available to everyone who needs one regardless of financial status.

Disabled people live in a catch-22 world, where a system is created where people cannot live and function independently because of active barriers being put up by society, but are then blamed by society for not being independent, which is used as an excuse to put up more barriers.

The Catch 22 of Disabled Dependence

4 thoughts on “The Catch 22 of Disabled Dependence

  1. 1

    Just to qualify what I meant by independent. Short version. A person capable of arranging for their own care. So when I think children I would have chosen not to bring to term I’m thinking anything likely to result in severe mental retardation. The issue isn’t the daunting task of caring for your child during your lifetime but what will happen to them when you, the parent, die. No matter how much care is available (or you can afford to have made available) how do you ensure that someone will care enough about your child not to either ignore their needs take advantage of them?

  2. 2

    I started paying a lot more attention to architecture and how it is created to exclude people with disabilities.
    As an able bodied person I never paid attention to such things. Then I had kids and some issues parents with small kids face are shared by people in wheelchairs: stairs, steps, narrow passages. Of course pushing a stroller is not the same as using a wheelchair. First of all many people will rush to your help when you’re standing in front of the stairs with your stroller and secondly it’s easy to carry a child plus stroller but not easy to carry an adult in a wheelchair.
    Then the kids were running around and many things were inaccessible for them or plain dangerous. They got hit by closing barriers because the light barrier was above their head when their head was at the same height many wheelchairs user’s heads are, not to mention buttons to push and heavy doors to open in elevators.
    In my university there are old elevators, but the way they’re designed they are clearly not meant to make the buildings accessible for wheelchair users, but easier for on average able bodied people.
    Again, I don’t want to compare parenting to being disabled, it just opened my eyes to the clusterfuck of public architecture.

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