different

There is a range of "invisible disabilities," which I will expand to include any disability that affects a person's behaviour or level of independence without having a corresponding effect on his appearance. That is: Losing a leg affects one's behaviour, since one cannot immediately run as quickly as a two-legged person, but there is a corresponding effect on appearance, so that society knows what to expect when a one-legged person enters the room. Autism, deafness, brain-injury, and a host of other disabilities (even mental illness) affect behaviour, but often have no obvious external indicators. If external indicators are there, such as scars, paresis or tics, they are seen as freakish qualities, with no relation to the disability. There is also no prosthesis and often no medication that can reverse or reduce the condition. I think the will to live with an invisible disability is less than the will to live with a visible one.

This continued into young adulthood, where I adopted a homeless "lifestyle" of having to commute several hours per day on foot to my tent or homeless shelter, along with a fairly rigorous yoga-regime. Even though I was awkward and slow, I improved, and kept moving into new circles of friends, hoping not to be the worst in the group. Invariably I was.

I remember one hike in particular: I had finally met a set of friends that seemed to be the right set of friends for me. We went for a hike. They ran ahead. I ran after them with all my strength, arriving over an hour behind them and injuring myself by falling on the way. On the way back, even a 43-year old with an injured leg was faster than me. The group wanted nothing to do with me after that.

	The Belonging Initiative
\/	Being different
	I have had an undiagnosed traumatic brain injury since the age of nine. For the next 19,5 years, I lived knowing that something was "wrong" with me, yet never being allowed to arrive at the obvious cause (auto accident, brain injury), because I looked almost normal and my (divorced) parents refused to allow me to "wallow in self-pity."
	I must say that there is nothing I wish more than to undo the set of decisions that put me in the position to be in that accident, and that I think that the type of disability, as well as support from family and community, is very important in determining a person's will to live. Let me explain:
	There is a range of "invisible disabilities," which I will expand to include any disability that affects a person's behaviour or level of independence without having a corresponding effect on his appearance. That is: Losing a leg affects one's behaviour, since one cannot immediately run as quickly as a two-legged person, but there is a corresponding effect on appearance, so that society knows what to expect when a one-legged person enters the room. Autism, deafness, brain-injury, and a host of other disabilities (even mental illness) affect behaviour, but often have no obvious external indicators. If external indicators are there, such as scars, paresis or tics, they are seen as freakish qualities, with no relation to the disability. There is also no prosthesis and often no medication that can reverse or reduce the condition. I think the will to live with an invisible disability is less than the will to live with a visible one.
	When a person is born with or acquires a disability, his dependence on family increases manifold. Of course, were I a brain-injured person with a family that actually cared for me after the injury, and saw to it that my disability were recognized by schools, doctors, and eventually places of employment, I would have seen it as a journey. In fact, as a child I often wished to be injured in the hopes of being loved more... But I digress.
	As an adult now, after having failed to start an independent life despite many solid attempts, and finally reconciling to living with a boyfriend overseas, I often wish to have died long before having faced current challenges. Let me describe a couple of the most hurtful ones:
	I enjoy hiking and being in nature. As a child and adolescent, I put out nearly super-human powers to be not only as quick as my peers, but often quicker. I trained up to eight hours DAILY, on top of going to school, trying to reach the level of grace, speed, and coordination of my peers. Since I was without diagnosis, I had no rational reason to settle for less.
	This continued into young adulthood, where I adopted a homeless "lifestyle" of having to commute several hours per day on foot to my tent or homeless shelter, along with a fairly rigorous yoga-regime. Even though I was awkward and slow, I improved, and kept moving into new circles of friends, hoping not to be the worst in the group. Invariably I was.
	I remember one hike in particular: I had finally met a set of friends that seemed to be the right set of friends for me. We went for a hike. They ran ahead. I ran after them with all my strength, arriving over an hour behind them and injuring myself by falling on the way. On the way back, even a 43-year old with an injured leg was faster than me. The group wanted nothing to do with me after that.
	That is by far not the only such event: I remember biking and walking over the years with my 45-60-year old father, not being able to keep up with him, even though I biked daily and he did not. And to this day, I cannot keep up with a group of hikers twice my age (33). Of course this is not so bad in itself -- I have a boyfriend who usually does not mind waiting for me. But it does mean that the group does not like me, and that my boyfriend must choose to hike either with me alone or with his friends. (My boyfriend is 55.)
	This slowness has expression not only in fitness levels, but also in thought, understanding of speech, and speaking. It has resulted in disciplinary action in places of work, resulting in rejection either from my end or from the employer's end. It seems I am doomed to non-acceptance, since I am not disabled enough to be taken seriously about being disabled, but too disabled to participate normally in society. Most daily activities do not hurt to the point of wanting to have died before experiencing such challenges, but some do; and the cumulative effect of several activities does. (Please let me point out that hiking, biking and yoga are not the only activities in which I am disadvantaged. In the interest of keeping this entry at a comfortable length, I have included only the examples above.)
	Again, the emphasis is on "wanting to have died before experiencing such challenges." If I were to be offered death tomorrow, I would not take up the offer.
/\	H (7/08)

Being different