Pop quiz time everyone. Sharpen those pencils – or maybe in this day and age it’s create a new note on your phone – and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know – the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?