Little Mountain

By Donna Goodwater

I was born here in Vernon, British Columbia. My mom and dad are both from Okanagan in Band One; my grandparents are also from here.

When Little Mountain first came home from the hospital, she seemed really healthy, a beautiful baby. I was so proud because she was such a pretty girl. She was developing normally and we were really pleased.

We didn’t want her to have her two months’ immunization. Me and her dad both had funny feelings. We both thought, it doesn’t feel right. But we took her in and got her needle. Everything seemed okay. Then about 11 o’clock that night she had a grand mal seizure, and by the time the seizures quit there was basically nothing left of her. She was just a rag doll. There was really nothing they could do, there were so many seizures happening. We brought her home and watched her slowly deteriorate. Pretty soon it got to the point where she wasn’t even fighting it anymore. That was the part that was hard, because I knew she wasn’t going to stay too much longer when she started getting to that point.

I started getting really desperate and then that night in a dream an old, old man’s face said, "I am the medicine man." I said, "What?" and he said that to me again. I said to him in my dream, "But there are none," and he said, "That is where you will find your answer."

I thought it was worth a try at that point, because we knew the doctors could not do anything. That ceremony changed my whole life. I wasn’t afraid, even though I had never experienced it before. I felt comfortable there. I felt we fit there. One doctor sucked some stuff out of Little Mountain’s head, another doctor took some stuff out of her chest and all 13 of them took something out of her spine. At the end of the ceremony they told me that she was going to live but it was up to me to accept her form. And I said it didn’t matter to me what form she chose as long as she lived, and I would be the best mother that I could be for her.

Two or three weeks after we got back, the doctor phoned from Vancouver and said, "How is Little Mountain doing?" and I said, "She is doing excellent. No seizures." He said, "No, that is impossible," and I said, "No seizures." The doctor just said, "I don’t know what you did with this girl, and I don’t want to hear anything about it if you can’t explain it to me medically, but just keep doing what you are doing. We are supporting you."

There is a need here, a very real need, and I think that we have to do something about it. I am never going to give up. This is something that I feel very, very strongly about and I really feel that if I work at it hard enough and have enough people working with me we can make changes, positive, holistic changes for our people. That is what we need. We deserve it. As native people we deserve to be treated with dignity.

I can see the holes in the system. I can see where the injustice lies and it really angers and frustrates me. In college they are teaching me that British Columbia is deinstitutionalizing; we are bringing people with disabilities out into the public to have a holistic life. There are so many opportunities for them now. I am excited about it because I believe this is really happening. This is while I am living off of the reserve, and it is a wonderful thing. Everybody is excited about it when they move back onto the reserve, only to find it is the opposite. There is no process of integration for native people. If you have a child with a disability, instead of everybody trying to help you to get the services, everybody is pushing you to institutionalize the child.

Little Mountain has chronic pneumonia. Her lungs get congested and a part of the process is to loosen the lungs and get the phlegm to come up, for her to cough it out. She wasn’t strong enough to cough all of it up so the doctor said we needed to put a suction down into her throat to suck that mucus out and make it a lot easier for her. I phoned the Band Office and said, "Little Mountain is going to need this suction right away." They said that we have to fill out the appropriate forms, and I thought, fine, we should have it in a day or two. I phoned them the next day, because it was still quite critical, and said, "What is happening with the suction?" She said, "We haven’t heard anything yet." I kept phoning every day and it took about a week to 10 days. She finally phoned and all they had to do was tell her yes, go into town and pick it up. Once they gave the approval in Vancouver we had it that same day, but Little Mountain ended up in the hospital. Maybe to them it is minor, but to us it was a major problem. She could have died.

In this particular band, Little Mountain is not the first child like this. We have children who have Down’s syndrome, who are deaf, blind, have diabetes -- we have just about every disability. If you were to count up all of the children with disabilities out here, you would find that there is a very high, high number. They all need services, but none of them are getting it. So Little Mountain is not the only one out here.

There are a lot of hidden services. If I say, "How come I didn’t get this service?", they say, "You didn’t ask." I say, "How can I ask if I don’t know the services are there?" There are no manuals, no posters, nothing to tell you exactly what medical services will cover. So in Little Mountain’s case, for the first nine years of her life I pretty well covered everything. When I first started teaching her how to get her eyes focusing, I just went and bought the instruments myself. The same when we were doing the upper trunk control: I just rolled towels up and put them under her, and got styrofoam to cut out. When I was teaching her how to sit, I just got a basket and cut a hole in it. I made all of these items myself because I wasn’t aware that these very items I could have picked out from a catalogue, and medical services could have paid for them. Nobody told me any of this.

The way I look at things, because of all the problems that I and Little Mountain have gone through in trying to get services, she is being victimized twice: once for being native and again for having a disability. And the thing I always wonder is, when does that victimization stop -- is it going to stop when she is dead?

The athome program provides things like Pampers, Ensure (the extra food supplement) as well as other medical supplies, respite services, nursing care. These are the services that I was needing because I had always paid for them myself. When I applied to the province to get services, we were denied, because if you are a status Indian living on the reserve you are not entitled to B.C. provincial services. They told me, "The reason we can’t provide you with these services is because they are already provided by the federal government." I said, "What?" and she said, "Yes, all you have to do is go to your Band and tell them that you need these, and the federal government will supply them." So I went to the Band and I applied. I asked for respite services, and they said that was through the Social Services department. I went to the social worker and she said, "We don’t give respite care on reserves." I went to the medical services and said, "Would you pay for Little Mountain to get Pampers and her Ensure?" They said no. They laughed at me and said, "Are you joking? Why would we pay for that? That is your responsibility. You are the mother." I said, "But if I was living off the reserve, the province would pay for these," and they said, "Well, we don’t pay for them."

If I was to move off of the reserve, life would be so much easier. But that is a convenience for the government. A lot of our people are doing that, saying they have to move off of the reserve to get appropriate services. This is my home. This is my heritage. This is where I belong. It doesn’t make any sense to me that I should have to move or leave it in order to accommodate the bureaucracy.

The more we deal with the system, the more I encounter the same attitude. To me it is like some unwritten law that native people are stupid, you can tell them anything and they are going to buy into it, you don’t have to give them ser-vices and there is jack-all they can do about it. I realize that all across Canada there are native people with disabilities and nobody is helping them. Nobody cares. All they are doing is studying it to death. How many people across Canada are spending money doing surveys when it is really obvious that the need is there for natives with disabilities?

What I see as the problem is that you go to Band Councils and say to them, "How many people do you have with disabilities, and what are their needs?" "Oh, we don’t have any people with disabilities." They are still operating in denial. They are not recognizing that yes, they do have people with disabilities. Until they recognize that there is a need, only then are they going to be willing to do something and fight for the people.

Not once has my Chief or any of my Council come to me and asked me what the problem was. I had to go to the Band Office and make a personal request that the health nurse and the social workers come to my home and see our living conditions, see for themselves the ser-vices that I need. When Little Mountain gets sick, I have to go to the Band Office and they determine who is going to be responsible for what we need. If I go to the Band Office for a wheelchair for Lit-tle Mountain, that is medical services, so I go to the Band’s health nurse. She fills out the forms and then forwards them to Salmon Arm and they forward them to Vancouver. Once the request gets to Vancouver, it has to get approved down there. The approval could take anywhere from a week to six months -- I have heard of people who are still waiting for approval after over a year. There is no time frame. There is no guarantee that you are going to get services. Everything is sort of ad hoc. If you are lucky and somebody is in a good mood one day, you might get your services very quickly. But if you are unlucky, you might not get them at all.

I don’t see our needs being met. There is a gap, there are flaws, and it is in all parts of the federal government’s programming for natives. It is in the policies. The policies are full of discrimination. The people whom they have hired at the Band level are, in a lot of instances, not really educated enough to provide appropriate services. Then they have the people above the Band level, in the districts, who also don’t have the knowledge of what is really going on at the Band level in order to see that appropriate services are given. The whole system needs to be redone totally and reworked. It is a joke, unfortunately.

I don’t know how you get through to them. So I look at it now, I guess, in a different light. I know that when Little Mountain dies, I will have given her the best that I could. But can all of the bureaucrats, the Department of Indian Affairs, medical services, the Band Offices, Tribal Councils and Band Council -- can they say that? Can they honestly say that they gave native children of Canada the best that they could?

(The film Little Mountain is produced with the support and technical advice of the Status of Disabled Persons Secretariat, Human Resources and Labour Canada. It is directed by Phil Pendry and will be aired on CBC in the near future. For more information about this film, or its sequel, If Only They Would Listen, contact Smokey Tompkins at: National Aboriginal Network on Disability, 203 Catharine St., Ste. 60, Ottawa, ON, K2P 1C3; phone: (613) 563-1066; fax: (613) 563-4768.)