Imagine learning you won't be able to work and it is unknown when you will work again. Not hard to imagine right now, is it?
Now, imagine knowing that there will never be an end to the situation that finds you out of work and that you will never return to work.
Many of us with disabilities find ourselves in this situation and most people don't even notice or think about the devastation and grief that this causes for us. There is a feeling of no ground underneath our feet, a feeling of deep fear and dependence on a system that we discover quickly doesn't work well at all. Additionally, we are taught that our work IS our worth and without it, we often feel and are taught that we have no worth. In fact, doctors and others, are often uncomfortable acknowledging our inability to work because they somehow think we are being manipulative and just lazy. This reaction from people in and out of the system, friends, family acquaintances reinforces that feeling of worthlessness and creates feelings of both shame and hopelessness. In my 20 years working with people with disabilities, the majority of people I have met who find themselves in this situation want to work and grieve the loss of who they were and who they hoped they would become.(myself included)
Many people I have educated about the system have some assumption that there is a safety net for people with disabilities. There really isn't much of one. For many, it takes years to get a positive disability decision from the federal government and while they wait, they often have NO income. In our state, some qualify for something called Aid to the Needy Disabled that they can get while they wait for their decision. The amount is $217. Imagine knowing that you can't support yourself and knowing that you will will either get nothing for a a few years or a measly $217 with a pittance of food stamps. Many with disabilities end up homeless for this very reason. (imagine trying to find a place to rent on $217/month) And even if they get federal disability, the amount is not enough to afford rent and subsidized housings lists are years and years long. This situation will only be worse now with the pandemic and state and federal governments being completely strapped. It is not exactly a situation one enjoys finding oneself in, nor is it any kind of a situation where one feels secure or safe or even able to fulfill basic survival needs.
Not only is there little to no safety net, but for many of us, there is no treatment or cure for our conditions. For many conditions the 'treatment' is sometimes worse than the cure or the 'treatment' does nothing to help and often creates other conditions. (for example, psychiatric meds that cause conditions such as tardive dyskinesia or diabetes) Many become uncomfortable with our lack of ability to comply or fit in with regular society and think we aren't trying hard enough to find our miracle cure or that we have given up. When, in fact, many learn that reaching out to our medical system often just creates more and more frustration and depression as one realizes one won't be returned to that elusive 'health' that society so wants for us. Many of us might be able to work if we lived in a system that had more flexible work options and support to help us contribute through work or volunteering. But, the system doesn't make this easy when, for some, you can lose health insurance if you work, or lose the benefits that took years to acquire. We have systems set up to help people with disabilities find and keep work, but these systems are often overloaded and many get very little help from vocational rehab and other types of work assistance.
It all leaves one feeling like there is no hope or reason to move forward when homelessness or complete financial devastation and bankruptcy may be the only answer. And even if it isn't, the feeling of dependence on charity and others is depressing at best. When I hear all this talk about the hope of returning to work and returning to 'normal', remember that for many of us, there is no 'normal'. The normal for some might be a daily feeling of terror when one leaves one's house if one's skin color is anything but white. The normal for some of us might be the feeling of fear and panic about how we will survive waiting on benefits that we don't even know we will get or how long we will have to wait. Or, most appallingly, the normal of knowing that the elderly and the disabled were far too easily thrown under the bus by many in our society during this pandemic as a 'necessary' sacrifice for our economy. And finally, the normal of knowing that we are deemed unworthy by a society that finds worth only in work and in 'persevering' in spite of obstacles. Some of us have tried to persevere, but for some, just surviving another day is persevering.
This is all I have on all of this right now. It leaves me with something I've known all along. Our society does not truly care for the most vulnerable. In fact, we are hidden away and, especially if we have mental disabilities, we are not spoken about. Right now, some just hope to kill us off. People want to pretend there is a safety net so that they don't have to reach out and care and help others around them or even think about those who are faced with little to no safety net. We want to pretend that work is what makes a person's worth instead of acknowledging the inherent worth in all of us. When you return to your new normal post pandemic, please don't forget that there are many of us out here who are, at times, unable to leave our homes, to participate in 'normal' day to day life, to work, to 'produce'. We are here, we deserve more of a safety net and we are worthy of life and love.
