Indiana Governor's Council for People with Disabilities 2008 Conferenc - Sylvia

My name is Sylvia Jackson and I live in Middlebury, Indiana in Elkhart County Indiana. I’d like to talk about my experience of being in a wheelchair, having a disability with multiple physical disabilities of which many I still have. It's just that I have the Lord's blessing of many miracles of healing and I’ve had a lot of rehab and another surgery of which I am back up on my feet since a year ago without the wheelchair so that’s had many challenges in itself. So my life has changed. I’ve had a lot of transitions. During the time I was disabled I lived in a house in housing that was not accessible for two-and-a-half years. It took almost two years for me to get a ramp off of my for me to get out without much difficulty. The only time I got outta my home was for medical appointments. It was a very reclusive time when I was use to working full-time and being around people. It started with a head injury of which that healed and I progressed away from that,that was in 1990. Then I had degenerative arthritis and I went into demyelinating disorder, a neurological disorder of the spine of which I still have that. That has affected from probably the waist down and I have difficulty with balance, spinal problems from that. It was at that time that people started calling me and asking me about various questions and information that they needed. They said, well you would be a good person to help us with finding information and advocating for people because you know so much. You've gone through some of systems and discovered things. And at that time I didn't have any transportation. They told me to sell my car; I probably would never drive again. The healthcare told me I never would work again, which I am back to full-time work. I work Title V with the Department of Labor, National Label Network, I do a senior training program. I’m a program monitor and I travel three counties up in northern Indiana. Yes I drive myself. I did finally when I started setting goals for myself and got into accessible housing finally. I didn't have transportation so I was still very cut off for socialization activities and for any aspect of trying to go to work. I was doing a lot of public speaking for my organization then, that and I started coming to the conferences. I got a van through voc rehab. Things just started opening up for me and that was a wonderful period of time when I really felt my liberation you might say. You know, with the transportation and those systems were, you know, not exactly I had worked on the transportation system and still do with Elkhart County with our public transportation system and helping to access new routes and to make it more accessible. We still need a lot more work in that area. I'm interested in getting paratransit started and where there is more of a demand call things like, because right now it doesn't run in the evenings late or weekends. It runs Saturday but no Sunday or holidays so people can’t get to church. They can’t go to things in the evening so it does affect one's life that has disabilities and many times transportation is expensive, which people are on fixed incomes. I understand that aspect of it too. I moved to a condo. I bought a condo with a low interest loan through FHA that was a struggle in itself some of, you know, hoops and bells you to have to go through with all that process. Several times I wasn’t able to move to certain areas because of certain laws on certain HUD loans and so it didn’t go through. It was very disappointing but finally we got one through, I had a realtor who was very persistent and she was as persistent and stubborn as I was. I'm loving it. My cat and I live there. Recently in the last eight weeks I have sold my wheelchair van and made that more accessible to someone else who needs it. If there is a time that I need to go back to that then I'm sure I'll be able to do that. The biggest area is employing people with disabilities. I know I need to be employed in area where I’m making much more money where I’m being regarded for my experience and the things that I have to offer and I don't feel like that I'm doing that now. I love what I do but it isn’t even, I don’t even have the ability hardly to make a living. So I would like see that advance more. See that change come about. Well I think we need more support because I think they really feel kind of left out of the quote unquote system. You know, it's real hard for them maybe to get around. It’s hard for them financially, you know, and they can’t travel this far to, you know, we need to get something more into all the areas of the state that would be helpful.