I was born in Peru and, when I was a baby, I was adopted and came to live in New Mexico with my parents. One of the things that I count as a real tragedy in my life is growing up in Albuquerque, and not learning Spanish, and if you could grow up anywhere in the US and learn Spanish it would sure be in New Mexico where there is a large Hispanic population! But I ran into the "cultural melting pot" of the US upon arriving...

The Mythical Cultural Melting Pot

I'm sure you all heard this when you were in school. Our teachers used to boast about how the US was this great melting pot, where anybody could come from any country and find a place in this society. And yet, what was meant by that is that you could find a place in society provided you gave up your language, your food, your religion, your dress and fit in, as long as you were just like everybody else, then you could find a place in society. And because of that, the generation of kids that I grew up with in New Mexico didn't learn Spanish. I'm forty-five years old. I had a lot of friends who were Hispanic and they didn't learn Spanish from their parents, either... Because at that time, there was an assumption that if you were going to fit in, and be assimilated, you should speak only English.

So one of the early tragedies in my life, was growing up detached from my own cultural identity, by not learning the language. Off course, I started off with Spanish but at a year and a half your vocabulary is a little limited.... and so, I suppose Spanish technically was my first language but not a great deal of it. Apparently I said "no" a lot, that was my early language.

Becoming Blind

And I think I had the same type of experience when I began my experiences with disability.

I lost most of my vision when I was seven years old but at that time I still had some remaining vision and to assimilate as part of society I had to try to conceal or thought I had to conceal my disability. So even though I didn't see well, I didn't want to have anything that drew attention to the fact that I had very poor vision.

From the time I was seven I couldn't see enough to read print, but I wouldn't learn to read Braille, because Braille was associated with disability. Braille was for blind people and I could still see a little bit so I didn't want to be identified as disabled, as damaged, as inferior. And so I tried to pretend that I could see normally, I tried to pretend that I was something that I wasn't. I tried to pretend that I was a fully sighted person. And as a result I grew up with a really terrible education.

Low expectations in education

I was exempt from the middle of the second grade through graduating from high school. I was exempt from all reading and writing assignments, including mathematics. Now if you take reading and writing and math out of the curriculum, there isn't a great deal left over! I was exempt from Physical Education (PE) also. If you grew up with a disability at that time period you were automatically exempt from PE--- you probably still are in a lot of places. I wasn't totally exempt, I remember in elementary school we went out for PE and the coach was teaching us about basketball and they made me the referee. I couldn't see well enough to know exactly what was happening but I stood on the sidelines which must have made me "fully included."

So I grew up with a terrible education. Now, it seems to me the logical questions would be: Ok, You had these feeling about your disability, but why didn't someone deal with you about your feelings or if they were unaware of the cultural aspects of disabilities, why didn't someone at least deal with the mechanics? Why didn't some one make you learn Braille?

And I think the answer is rooted in the other parts of the cultural experiences of growing up with a disability: nobody had expectations for me. As long as I showed up, and was well behaved, people thought I was doing as well as they could expect. And so it didn't seem to surprise anybody that I couldn't read, I couldn't write, I couldn't participate in mathematics.

Learning Braille

When I was 16 years old I had many eye surgeries and I was in the hospital at San Francisco and it was at that point that I was told that I was going to be totally blind and so the rehabilitation sent a teacher to the hospital to teach me Braille. She brought me this book and it had a raised letter "A", with a Braille "A" underneath, a raised letter "B" and under that a Braille "B" and so on. Then she said that she was going on vacation and she would be back in three weeks and would start teaching me Braille.

While I was in the hospital I didn't have much of anything to do, so I read the three part book. She came back and I said "well, I've gone through the three books." She had me read a few sentences at the end of the last book and said, well she guessed I had learned the Braille and so there was nothing else that she could do for me. She left and I never saw her again.

Now, I tell you that not to rag on the rehabilitation system but to say that if you had to point to the greatest failing of the rehabilitation system in general -- it is that it views itself as a service or as a delivery system that deals with the functional aspects of disability. In other words she looked at me as a young blind person and saw a need to learn to read and write Braille, and of course that was true, but I also needed someone to encourage me.

Self-Image and Job perspectives

When I was lying there in the hospital I was trying to think what jobs could a blind person do and I thought of two jobs, I thought I could be a DJ or a psychologist. Those were the only two jobs that I thought a blind person could do. After all, I could still talk so I guessed I could be a DJ or a psychologist. In fact my undergraduate degree is in Psychology and so I held on to that for quite a while.

It is a major failing to think of the rehabilitation system as dealing with only the functional aspects of disability. In my view, if the rehabilitation system is to really meet its responsibility to help people with disabilities to achieve real integration in society, it must deal equally with the attitudinal, the cultural aspects, of disabilities as well as the functional. I needed to learn to read and write Braille, I needed to learn to use a white cane to travel independently, I need to learn the skills to care for myself, but I also needed hope and perspective and encouragement and someone to believe in me.

Rehabilitation System & Minorities

One of the things that disturbed me when I went to Washington back in 1994, there had been complaints that people from minority backgrounds were not being well served by the rehabilitation system nationally and so a study was commissioned. And what the study found was that minority people with disabilities, had equal outcomes to non-minorities who were in the system with similar life experiences, therefore there was no discrimination.

So, in other words, did minority people earn the same amount of closure? No, they earned less. Did they receive as much training? No, they receive less. How do you say there is no discrimination? Well, because if you're a high school drop out and you're also a member of a minority group, you had the same treatment as if you were not a minority drop out. So, there was no sense of responsibility to encourage people and there was no sense of helping people reach their full potential.

That to me is where the challenge lies in our rehabilitation system in this country and I think that the way to approach it, is to recruit more minority people into the rehabilitation system, people who will bring different cultural experiences to the rehabilitation system.

Cultural Sensitivity

When I directed the Rehabilitation Agency for the Blind in New Mexico, one of the counselors was explaining to me that if clients came with their family members, the first thing he would do is insist that family members wait in the lobby because he said it was important for the person with the disability to learn to speak for him or herself. Sure, developing independence is an important thing, but this approach shows a total disregard of cultural values.

New Mexico at that time, probably still is, was the only minority/majority-population state. Together, the Latinos and Native Americans represented more then 50% of the population. And so again, a disregard for cultural values, input that melting pot concept -- that this is the way that whites in our society function and so that is how everybody in our society must function.

Final thoughts

In conclusion, let me just say that I find a conference of this type to be important for the information but it is also important because it is empowering, it is empowering to get together and to realize that we are not alone in dealing with these issue; that we do produce a synergy or a critical mass (to use a Washington term) in focusing on these issues. And, finally I want to say that to expand opportunities for Latinos with disabilities we have got to do it. We have got to assure the policy-makers in Washington and the service providers in our home communities, of our right to have services, our right to have high expectations, and our right to have our culture respected.

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