All disabilities - or, difabilities, as I prefer to call them - have certain elements in common, regardless of the physical or mental or behavioral manifestations each possesses. Some have more chronic pain than others, some are more visible than others, some are even more "money-worthy" than others. There are "orphan diseases" which should be updated to include syndromes and conditions, as not all "orphaned" disabilities are diseases, per se. There are some that present multiple ways - that is, they manifest on multiple parts of body and/or mind. Some are in fact fatal, some short-term, and some lead to steady deterioration over many years. But these are merely some of the ways difabilities may differ.
But the commonalities are often overlooked. For one, everyone with a difability knows they have one. If the physical and/or mental manifestations of that difability don't make it clear, then the reactions of the non-difabled world will make it clear sooner or later, and often in trauma-inducing fashion. For another, except in those difabilities that resolve, whether from a disease running its course, or because the difability was due to an injury that finally heals, the difabled understand they are going to be dealing with their condition and all it may imply for their entire life. This may mean having to deal with issues such as trying to make a living, having to pay for products and services others will never be faced with, even having daily concerns for one's personal safety, especially in some less enlightened cultures around the world.
These commonalities can also have deep psychological components, deep wounding starting quite young, sometimes from family members, schoolmates, teachers, even medical professionals who have poor training and even poorer capacities for compassion and understanding. The courts and law enforcement often display extreme ignorance when dealing with handicapped individuals, especially those who have developmental difability. There have been many instances, even in the US, where individuals with cerebral palsy have been mistaken for drunken or drug-compromised individuals and treated abhorrently. Such experiences leave significant mental health issues that people with difabilities cannot always afford to get the proper help with. To make matters worse, there are not that many mental health professionals who are skilled in meeting the psychological needs of the difabled. And if such an individual is also trying to deal with chronic pain, they are often mischaracterized as merely seeking drugs to feed some mythical addiction. The deeply flawed nexus between our medical profession and our legal system serve to make this a nightmare for such people.
One of the things which make seeking resolutions for these misunderstandings, injustices, and shear ignorance on the part of those who should know better is the social fragmentation of the difabled community. Too many have seen it more in their self-interest to place the focus on their own specific difability - MS, MD, CP, HIV-AIDS, arthritis - and in the short term, this fragmentation has worked - for those who have managed to gain the attention of the rich and famous. But for those who fall more into the "orphaned" zone, this fragmentation has made life even more difficult, and has made it less likely that we will see any improvement in broad-based psychological care, improvements in the reactions and responses of the legal and law enforcement community, and a deeper appreciation of how all those with difabilites are treated by the medical profession and the insurance companies.
I do not expect to see this fragmented behavior of the difabled community to change, certainly not in the near term. It works too well for those whose difabilites show up in larger numbers, and where funding levels have permitted there to be some advances in treatment, prevention, and palliative care. But there is a cost to this, which is borne mostly by those with "orphaned" syndromes, conditions, and diseases, and because so little funding and even less public awareness often attends the affected individuals of these "orphaned" classes, the situation can seem dire, unfair, and without hope. Maybe it is time to start a conversation among all the difabled community, to seek more equitable ways to deal with both the specifics of each form of difability, and with the commonalities we all deal with every day.
I am ready for that conversation. Are you?
But the commonalities are often overlooked. For one, everyone with a difability knows they have one. If the physical and/or mental manifestations of that difability don't make it clear, then the reactions of the non-difabled world will make it clear sooner or later, and often in trauma-inducing fashion. For another, except in those difabilities that resolve, whether from a disease running its course, or because the difability was due to an injury that finally heals, the difabled understand they are going to be dealing with their condition and all it may imply for their entire life. This may mean having to deal with issues such as trying to make a living, having to pay for products and services others will never be faced with, even having daily concerns for one's personal safety, especially in some less enlightened cultures around the world.
These commonalities can also have deep psychological components, deep wounding starting quite young, sometimes from family members, schoolmates, teachers, even medical professionals who have poor training and even poorer capacities for compassion and understanding. The courts and law enforcement often display extreme ignorance when dealing with handicapped individuals, especially those who have developmental difability. There have been many instances, even in the US, where individuals with cerebral palsy have been mistaken for drunken or drug-compromised individuals and treated abhorrently. Such experiences leave significant mental health issues that people with difabilities cannot always afford to get the proper help with. To make matters worse, there are not that many mental health professionals who are skilled in meeting the psychological needs of the difabled. And if such an individual is also trying to deal with chronic pain, they are often mischaracterized as merely seeking drugs to feed some mythical addiction. The deeply flawed nexus between our medical profession and our legal system serve to make this a nightmare for such people.
One of the things which make seeking resolutions for these misunderstandings, injustices, and shear ignorance on the part of those who should know better is the social fragmentation of the difabled community. Too many have seen it more in their self-interest to place the focus on their own specific difability - MS, MD, CP, HIV-AIDS, arthritis - and in the short term, this fragmentation has worked - for those who have managed to gain the attention of the rich and famous. But for those who fall more into the "orphaned" zone, this fragmentation has made life even more difficult, and has made it less likely that we will see any improvement in broad-based psychological care, improvements in the reactions and responses of the legal and law enforcement community, and a deeper appreciation of how all those with difabilites are treated by the medical profession and the insurance companies.
I do not expect to see this fragmented behavior of the difabled community to change, certainly not in the near term. It works too well for those whose difabilites show up in larger numbers, and where funding levels have permitted there to be some advances in treatment, prevention, and palliative care. But there is a cost to this, which is borne mostly by those with "orphaned" syndromes, conditions, and diseases, and because so little funding and even less public awareness often attends the affected individuals of these "orphaned" classes, the situation can seem dire, unfair, and without hope. Maybe it is time to start a conversation among all the difabled community, to seek more equitable ways to deal with both the specifics of each form of difability, and with the commonalities we all deal with every day.
I am ready for that conversation. Are you?