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Inclusion - We All Benefit

cac IB PhotoBy Isaac Baldry

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First, I want to thank you, for taking the time, to be part of a conversation, about inclusion. I really wanted to be a part of this webinar, because of how important inclusion is to me. When I started thinking about, and planning what I wanted to say, it felt like such a big project. I decided to start, with why do I feel the way I do, about inclusion.

If you have heard me speak before, you've heard me talk about being part of a big family. I think my views on inclusion, were again impacted by the values of my family.

It seems odd to say this, but I don't think, growing up, my younger siblings, even knew, I had a disability. My disability was just a part; of who I was. The expectation, was that we were all, doing everything together. Anyone of us could have needed something, in order to participate. We just looked at what did we want to do, and what would be needed to accomplish it.  In the community, we had to consider wheelchair access, for me to participate with my family. If lack of access meant I couldn't participate, then no one participated. If it wasn’t something we could do together, then it didn't have value to our family.

We started from the perspective, that family activities, meant all. Sometimes we got creative, but that tended to add to the activity, because we were working together. It is really empowering to be so valued. I learned to expect to be a part, and even part of the solution, if one was needed. These experiences have shaped, the values and views, of myself and my family.

The Rural Institute for inclusive communities, has a consumer advisory Council. Although the name of the council has changed over time, I have been a member of the group, since 2007.

As council members, we have the opportunity, to participate in workgroups, and on projects that are of interest to us. In 2014 the council began discussions, on creating and using a pocket of money, to promote community inclusive projects. The council formed a work group, around the project, we called, the community investment fund. The work group, learned about how other states and University centers, were using a grant like this, to promote inclusion. We developed our materials and grant application, so that we could start to promote the opportunity, across the state. The community investment fund, would be used to promote, the full inclusion of people with disabilities into their communities, through participation in activities for all people.  We were looking for projects that promoted people with and without disabilities, experiencing life as equaled and valued participants learning, playing, and living, as a community. In 2015, our first recipient of the grant, was Summit Independent Living Center, to support their work, on a local project of a live comedy and variety show, they called “Missoula live”. It was a 10-week communication through improvisation program, for individuals with and without disabilities, with a final performance, in which 17 participants were the cast.

In 2016, the grant was awarded to Eagle Mount of Great Falls, to support their tippy toes; movement, music, and play, program. A class offered in six weeks’ sessions, for infants and toddlers, with and without disabilities. The goal of their program, was to increase the understanding and excepting of diversity, giving families in the community, the opportunity and choice, to enjoy the same places and activities as anyone else.

As we have worked on this project, one of the biggest challenges to me personally, was to help people really understand, what inclusion is.  I now believe that it is the responsibility of the community investment fund project, to teach, and model through our support, what inclusion is.

This often brings about, the uncomfortable conversation, of what truly is inclusion. Although it has to vary based upon the needs of the individuals, inclusion is happening well, when the people participating together, don't notice the differences. By that I mean, we are focused on the value of all people, and what they bring to a project, instead of just seeing a person by their disability.

I thought maybe going through a few examples, may help you understand, what I am talking about.  Let's start with the idea of a dance.  While in high school, I was able to attend several dances.  Some of what I experienced was inclusive, and some, not quite the same as my peers.  Being at the dance with all the other students, was a blast.  I would have considered it an inclusive activity.  I was able to participate in all parts, including the grand march.  Grand March is a community activity, for how all attendees enter the dance.   Those planning the dance, when I was attending, included me and planned, for my entrance into the gymnasium.  People considered, that I would need wheelchair access, and that meant, no stairs for anyone, entering the dance.  They didn't change the entrance process.  Officers and the planning committee, enter the dance first.  I didn't get to go first, just because I use a wheelchair.  I waited in line with my date, for our turn to be announced.  Once in the dance, we planned for me to have access to the end of a table, but I sat with my date and friends. We did all the same things, pictures, dancing, it was a social activity.  Before the dance, either a girl asked me, or I had to be brave and ask a girl.  Same as everyone.  I would buy tickets, and the girls took care of flowers.  We did pictures at parent's houses, and then went to dinner.  Dinner was the tough part.  I would have to have assistance at dinner, for eating and drinking.  That meant, I needed an aide to support me.  It created a situation, where it was not just peers.  My aide tried, to be away from the table, as much as possible, but would need to be there sometimes.  This made it uncomfortable for others.  I think it would have been less stressful, if we had gone to dinner as a group, but that never worked out.  Being included as I was, gave me the opportunity to have a shared experience that was the same as my peers.  My being at the dance was valued.  People wanted to have the experience with me.

Sometimes we hear of "special dances".  A dance that others will put on, so that people with a disability, get to attend such an event.  The goal, is to create a social activity, for people with disabilities, because it is viewed, they don't have the same, social opportunities.  People putting the dance together, often feel good about doing something for someone else, someone that they may feel has less than them.   I am not saying doing something for others is wrong, I am just saying is this kind of activity inclusive? Would I go to an activity like that?  It depends.  It is nice to be treated special.   Everyone enjoys others focusing on how great you are, wanting you to have a good time.  But if one group is doing it for others, they feel are lesser in value, or believe they couldn't have such an opportunity for themselves, what are we saying about each other?  Another thing I would think about would be are my friends going?  If anyone is thinking about going to something social, they want to be there with the people they consider their friends.  The people they want to share the experience with.  For an activity like I am describing, does that mean as a person with a disability, my only friends can be other people with a disability?  What if I wanted other friends to come, who didn't have a disability?  They couldn't, because they were not the type of people, the dance was for.  How could we make the idea of a dance inclusive?  What if it were just a community dance?  How would planning be affected, if people with disabilities, were part of planning for the dance?   Could they possibly identify barriers, or what they may need, so that they, could have the same experience? Do we value and benefit, from each other, when people with and without disabilities, share experiences?   It can create an opportunity, for people to see each other just as people, with individual strengths.   These opportunities could be anything in the community; volunteering, working, playing.  The point is all are valued as needed for success.

Isaac Mesa FallsI will give you another example, but more personal for me.  This last summer, my family didn't have time, to really plan a vacation together.  We try to spend some time as family and together, every summer.  As many as could, carved out a few days before the start of the new school year.  My two younger siblings, both, were going to be starting back at college.  They don't come home for the summer, so if we don't make time together, it just won't happen.   We all like to go to Yellowstone, so we found a house, just outside the park.  We went south near Island Park Idaho, as it was an area we had not explored.  And with short planning, found an accessible home to rent, for anyone who could make it.  We met there, and worked out plans, for what we wanted to be sure and do.  One day was to be in the Park, and another was to explore the local area.   We made plans to go to Mesa Falls, we had never seen them.  We checked online for wheelchair access, all looked good.  We packed a picnic and took off for the day.  It was a short drive, but long enough we were glad, to get out of the car and walk.  We could now tell from the park map, there was an accessible trail, and in places, there were stairs.  We checked at the ranger station, no worries, we could definitely see the falls, from the accessible trail.  Glad to be out and moving, we took off for the falls.   When we got to the falls, yes we could see the falls, but we could also see the stairs, that lead to a better view, at the top of the falls.  I told everyone to just go ahead.  I can see them; they will be just below me.  Some went down to the falls.  My little brother, I say that because he is younger.  I remind him, he is the little brother.  He is also 22, 6 foot 2, and a 190-pound college athlete, so, not really little.  He didn't like how it felt at the bottom without me.  The experience was wrong.  He ran back up. Told me I was going down to the falls.  The wheelchair couldn't do the stairs, but, I could. He unbuckled me from the chair, let me adjust myself so I could see, and we both were off down the stairs.  It wasn't going to be the right experience, unless we were all together at the same time, making the same memory.  We took pictures, threatened to throw each other over the railing, but all went to this new place in a shared experience.  None of us would have valued it the same, if we were not together.  Carrying me down and up the stairs, didn't faze my brother.  He still moved just as fast, and we beat everyone to the top.  It created an opportunity, where we even felt more bonded because it was together.  We hiked a bit more, and went back to the ranger station for a suggestion, on an accessible location, along the river for our picnic.  It was my favorite day of the trip.   I think his favorite too, as our picture, is his Facebook background.   It isn’t the first time my brothers have made sure I was included, regardless of the temporary roadblock.  For all of us, the value we have together, is what matters. Experiences are not the same, if we allow exclusion.  They get it, because they have felt the experience.  They know what is possible, and won’t settle for less.

Not everyone gets to experience inclusion.  I want to talk about what Inclusion, sometimes looks like at school.  I think, I have to share, what that looked like for me.  In Grade school, Kindergarten through 6th grade, I was a part of the regular class. I was in with my peers all the time, except when I left for therapies.  This wasn't how it was, for all students with a disability.  Even the Special Education teacher, didn't know why I wasn't in her class.  It had to be written into my IEP, that she could not, come and remove me from my class.  My peers saw me as part of their class, not part of those other kids.  They didn't see my disability, they just accepted everything, for how I was.  I was expected to do everything else, regular students do.  Other students came into our class, for parties, or certain activities, but then, they went back to their class.  They were not viewed the same as me, by peers or most teachers.  Why?

Junior High and the start of high school were rough.  Now it was viewed, I couldn't be in the regular class.  I really struggled with being disconnected from my peers.  In high school, I started asking to be back in the regular classes.  Some teachers got it, they had expectations for me, they just knew I may have to adjust, how I did an assignment or activity.  Some teachers didn't get it.  They understood, they had to let me in their class, but they didn't expect anything from me.  Some teachers even had such low expectations, I had to tell them, what I would be doing in their class.  What would be my work.  All these things, affected how I felt about myself, and how my peers felt about me.  We have to teach inclusion. What does it say to other students, when it is ok, for a person with a disability to just show up?  The expectation is not that they will do anything or contribute, they get the same grade just for being in the room.  We are not teaching that all have something to contribute, that our success is based upon everyone participating and having a shared experience. These attitudes effect everyone.  Peers don't know how to interact; they need it modeled.  Teachers don't always realize their low expectations aren't being kind.  Giving someone a break just because they have a disability, teaches the person with a disability not to expect much from themselves.  What could happen, if we taught, all are capable, all belong, and all have value in order to have success.

Sometimes we try to create inclusion, but think inclusion is just measured, by do we have people with and without disabilities, in the group.  In this scenario, I am talking about, what I will call token people.  We invite a person with a disability to be a part of an activity or board.  We want to show, individuals with disabilities are represented.  The problem can be, what do we expect from the person with a disability?  Did we want them to just show up?  Did we consider, what they would need to actively participate?  Did we consider what they bring as a person?  Do we feel, we need their participation to achieve success?  How we address these questions, can make a huge difference toward inclusion.

It can work the other way too.  We may have a group of people with disabilities, and add in a person or two, without a disability to create, what we now call inclusion.  Is the person without a disability, paid to be there? Are they a volunteer, doing something nice, for all those people with a disability?  Inclusion is not really about numbers, how many people, with or without a disability, are part of the group.  Inclusion, has more to do, with valued participation as a group, toward a shared outcome.   And by participation, I mean in all aspects, not just the fun stuff.  It is why, in our application process, for the Community Investment Fund, we specifically ask, if individuals with a disability, are a part of the grant application.  We want to know, if they are part of the idea, part of the planning, to what extend are all being valued, toward the end activity?  This also goes back, to the independent living concept, of nothing about us, without us.  People with disabilities have a role and value, throughout an activity.

I hope I have not come off too harsh.  I also hope I have made you stop and think, about what inclusion is or could be.  Inclusion is important to me.  It is something I will continue to work on, as I believe inclusion matters, to all of us.

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