THE ROLE OF SIBLINGS IN SUPPORTING THE DEVELOPMENT/SUSTENANCE OF SOCIAL CAPITAL FOR PEOPLE WITH DISABILITIES.Tuesday, 17 November, 2009John KramerThe Institute for Community InclusionUniversity of Massachusetts BostonBoston, MAjohn.kramer@umb.eduThe Sibling Leadership Networkjohn.kramer@sibleadership.comThis study was supported by NIDRR grant #H133B031134  and the University of Illinois at Chicago Graduate College

Introduction Sibling “stressors” – a word Dynamic: Life Course Must involve individuals with I/DD

Drawing from disability studies

The reasoning, Lack of opportunities, persons with a

disability Rely on informal/family support Reliance on siblings is a sign of lack of

networks Situating the sibling “problem” in

context Lack of access Non-representation of siblings with

disabilities Advocacy at group level “natural” relationships still happen…

Life Course Theory understand[ing] the meanings social

actors attribute to any stage of any career by understanding] how they define that stage in relation to their interpreted pasts and anticipated futures (Todd & Shearn, 1996).

Older siblings - institutionalization Middle siblings – mainstreaming Younger siblings - ???

Inclusive sibling research “...people with learning disabilities

currently have little control over their own lives, though almost all, including the most severely disabled, are capable of making choices and expressing views and preferences...” –Ramcharan & Grant, 2001

Inform our understanding of siblinghood through the context of disability

Siblings co-experience contexts…

Purpose Perspectives of siblings Examine,

Nature of relationship Meanings of support Social contexts through support transitions

Methods Recruitment/Sample Settings Informal Conversational Interview Accessible Methods

Recruitment/Sample Recruited through either sibling of the

pair 8 sibling pairs

Table 5: Sibling Demographics Shaded= 2 pairs from the same family

ND and D Ethnicity D ND Gender D/ND

Impairment MI ND Married

ND Children

1. Matt and George Caucasian 39 45 M/M Down Syndrome

Yes Yes Yes

2. Kim and Michelle Caucasian 44 49 F/F I/DD No Yes No 3. Luisa and Miguel Hispanic 53 50 M/F I/DD Yes Yes Yes 4. Shirley and John Caucasian 52 50 M/F Asperger’s No Yes Yes 5. Nicole and Micheal Caucasian 43 55 M/F Asperger’s-

I/DD No Yes Yes

6. Tammy and Jim African American 53 59 M/F Down Syndrome

No Yes Yes

7. Stephanie and Miles African American 25 32 M/F Down Syndrome

No Yes Yes

8. Gloria and Martin Hispanic 43 35 M/F Down Syndrome

No Yes Yes

Employment for Sibling Pairs Pair Sibling with Disability Nondisabled Sibling

1 Janitor; supported employment Insurance/lobbyist 2 Worked at local grocery store; competitive Information Technology Consulting 3 Sheltered Workshop Not Employed 4 Local grocery store; competitive Not Employed 5 Local grocery store; supported Not Employed 6 Sheltered workshop Corrections 7 Sheltered workshop Retired 8 Sheltered workshop Business

Inclusive research Must address acquiescence bias Strategies to mitigate acquiescence bias

Procedure Individual and joint interviews Honorarium Recorded, transcribed Fieldnotes Inclusive research strategies

Results Siblings developed a “sibling support

style” Occurred at different times – life course Nature and logistics of sibling support

emerged They all seemed to be effective

Diverging/Converging Life Course Nondisabled sibling moderators Development and Marshaling Social

Capital

Sibling Support Style Happens mainly when it needs to

Develops during transitions Like parents/not like parents (ND

Siblings) The nature of sibling support

Siblings pragmatism…making it work Even if it means alone! The future?

Supportive Connections and Capital for Siblings

Occur… In the family In the community

Development of supportive connections and social capital

Development of sibling support style

Support transition & Reflection of past

support

In the family

Diverging and converging trajectories

In the community

Nature&

Logistics of sibling support

Past history/biography &

Personal demographics

Life course context and opportunities

Policies and Services

Diverging/converging trajectories

diverged as siblings grew up and realized their differences

converged as they grew older and began to anticipate the future

Siblings realizing difference

I remember when it was time for him to go to kindergarten…

Siblings with disabilities realizing difference

J: I couldn’t walk, couldn’t crawl…nothin…I done that, like my brothers…well ummmm…I would stay there and watch them.

Differences in realizing… J: I knew I had poor grades in high school and grammar

school but we didn’t know why…I didn’t know I was disabled…I didn’t know anything was wrong with me.

I: what did you think about that? J: I was a little bit shocked, but not much…we didn’t know I

was disabled. Once I moved out of the house in [our old town]…25 years later…is when we found out that I was disabled.

…that really blew me away…when [John] said…that nobody in my family knew [he] had a disability until after my mom died. I did say to him…‘No, John, that's not true,’ I said, ‘we might not have had a name for it, [be]cause you didn't have a diagnosis, but we knew there was something.’

Converging: Aging and supportive connections Jim[‘s]…social calendar is not as busy as it used to be, but I mean he does bowling every Monday…he’s got People First once a month…He’s got the dinner dance coming up this month, and then we’re signing him up for some other things like to go to Coast Side or to the zoo, go out with his group from work for pizza.

Converging: Aging, change in function

They put him in two medicine[s]. One is for the depression and another one for the Alzheimer’s and I see that he’s now [better]. I’ll say, “I’m gonna put these dollars here…So he’s now again picking up and doing things that…he had stopped doing.

So I have another [appointment]…it takes months…I’m gonna go see his neurologist in February 11 or something. I have the appointment and I’m gonna mention him that again [we] concentrate on his Alzheimer’s and…depression that we’re concentrating on that immediately…When I go back, I’m gonna mention [to the doctor that Miguel] has to have an evaluation from a psychiatrist.

Converging:Aging, siblings with disabilities

I think it is because I do a lot of job here. It makes me tired.

The food made me get more older- it is fine. [I don’t] see any changes in [my]self. Now that [I am] getting older. [I don’t] notice any changes. [I am] fine…Before… I had more energy, but now just a little bit. Now, it’s not like before…

Converging:Aging, change in support

Well, the pie in the sky ideal would be that all 3 of [my brothers with disabilities] lived more independently with [the support of my sisters and I]…Even though some of those changes have happened, I almost worry about it going backwards because of them aging …I don't see any great things out there for any of us when we age if we need a lot of care, but especially [my brothers with disabilities]…[My nondisabled sisters and I] need to be watching how things are at the group home and...supplementing what [they don’t have] there, because there isn't enough money or support or people…Sometimes they think it could get a little better, but the ideal won't happen. I mean I think we would have to go to another country.

Development of SC2

social capital and supportive connections Siblings with I/DD shared stories about

connections within their families and communities.

Siblings worked hard to establish those connections and build social capital.

Supportive connections, family

G: yeah, and another boat hit us and my brother worried about me all the time…and I was a nervous wreck.

I: you were a nervous wreck? How did you get through that? G: when stuff happens, he make sure I’m doing okay. I: so you check on each other? G: yes. And my brother worried about me. About two three years ago I

got surgery on my hip bump…so they operate me that’s all….and they pulled my skin back

I: and what did Matt do for you there? G: …my brother he went moved by me so he worry about me.

G: …my brother went to a hospital one time…he had a problem with his stomach. His appendix in here…I worry about him so much…but he’s fine. He’s all better…I [did] worry about him

…in the family I: what do you do with [your nieces and

nephews]? M: My sister is out of the country right now, so I

will be taking care of my nieces and nephews M: I like to enjoy my sisters other sons and

daughters.

I: okay. Um, so…what do you like…what do you like about being with your nieces and nephews?

M: I like it because they have the…bigger screen to watch the TV.

…in the family, unclehood J: I love being an uncle…My niece,

Shelly- that is Tammy’s daughter. That’s who is having another baby. She’s gonna have another girl. A little baby. [She now has] 2 boys, and 2 girls…pretty great…I feel very happy

…away from family, own space

M: What I really like, once when [she] went out, I had the quiet apartment just to myself. Everything was QUIET (emphasis original).

J: I’m not in the apartment with them- I got a whole apartment by myself… yeah, peace and quiet.

…in the community [we]…go out shopping. We put some

makeup on and put nail polish on…[but we do] not [do that] a lot.G: and then [we] go to…book clubs too.

I: What do you like about doing those? G: I like…[going to TCBY] and afternoon I

did and in night I read Harry Potter and the sorcerer’s stone.

…in the community, employment

J…never really knew what it was like to have somebody telling me what to do… I never really had that in my life.

…in the community, barriers to retirement

I wouldn’t even think about that, because the government doesn’t allow me to make enough money to retire on…

…in the community, marshalling

….I start making calls about housing kinds of things. My brother starts pounding the street of local merchants. He actually gets a bite …

…in the community, faith Yeah. She goes to church every

Sunday. She has a very innocent faith..

Discussion Support occurs across a network of

supportive connections Supported sibling relationships provide

opportunities for autonomy and community participation of siblings with I/DD

Support occurs across a network of supportive connections

Limitations of what families can do If not the family, branching out… The interconnectedness of networks

Autonomy and Community Participation for Siblings with I/DD

Kim, Michelle John, Shirley

Factors influencing supported sibling relationship

Factors Age and life course contexts Key personal demographic influence Policies and services that enhance social

capital

Recommendations Recommendation 1: Incorporate Race

into Biographical Approaches to Life Course

Recommendation 2: Use Disability Studies in Future Research of Sibling Relationships

Recommendation 3: Link Outcomes of Services and Supports to Sibling Relationships

Recommendation 4: Suggestions for Including Siblings in Policy and Advocacy Efforts

Conclusions Siblings with disabilities are perceptive

of their brothers and sisters When siblings cannot provide support,

they usually start with what they have or scratch

The need to move beyond individual advocacy

Contact InfoJohn Kramer, Ph.D. Research Associate Institute for Community Inclusion University of Massachusetts, Boston 100 Morrissey Blvd. Boston, MA 02125  Phone: 617-287-4369Phone: 312-436-1839 E-mail: john.kramer@umb.eduWebsite: http://www.communityinclusion.org

Grant information… This study was support by

NIDRR grant # H133B031134 University of Illinois at Chicago

Graduate College