‘older women with disabilities, they have future as well…’ ageing women with intellectual...

‘Older women with disabilities, they have future as well…’

Ageing women with intellectual disabilities – do they have a place

in our society?

Iva Strnadová

University of New South Wales, School of Education, NSW, Australia

• the ageing population prevailing, global phenomenon (United Nations, 2002)

• people with ID - average life expectancy is increasing

The National Strategy for an Ageing Australia (2001):

• the number of ageing people with a long-term disability (such as ID) will increase

Women with Disabilities in a Globalised World; 10th August 2012; Iva Strnadová

Ageing with intellectual disabilities

Ageing women with intellectual disabilities

• women with IDs: more often poorer, of poorer health condition, lower education and more dependent on state support (Janicki, M.P. et al. 1999)

• ageing women with ID are especially vulnerable due to poverty, gender disadvantage, and the phenomenon of “disability accrues with age”(Walsh & LeRoy 2004, p.5)


Challenges for ageing women with ID

• less likely than women without disabilities to receive appropriate health services (Frohmader, 2002)

• employment or attendance at day care center: often only source of relationships and informal networks (Mc Villy, et al., 2004, 2006)

• informal network: staff members or by other people with ID (Forrester-Jones et al., 2006)


Challenges for ageing women with ID

• transition to retirement - additional challenges

• loss of family and support networks• prevalence of depression and anxiety

(Hartley & MacLean, 2009; Lunsky & Benson, 2001) - higher than in the male population with this disability (Lunsky, 2009)


Professional and Personal Background

• 7 years’ experience of working with adult women with intellectual disabilities

• Strauss and Corbin (1999) - professional knowledge and experience allows a deeper insight

• professional experience influences the way the author “sees” and “hears” the data

• crucial role of external validation - balance and necessary distance from the data


“Well-being of Women with Intellectual Disabilities: Voices of Women and their

Families”, Human Research Ethics Committee (HREC) of University of

Sydney, No. 04-2008/10575

The research was also supported by Go8 European Fellowship award (the University of Sydney).


Focus of research

• subjective perception of quality of life in adult and ageing women with intellectual disabilities

• level of self-determination level shown by women with an intellectual disability


Research criteria for participant involvement

• women aged 40 years and above

• good communication skills

• diagnosis of mild intellectual disability


Research participantsResearch participants

28 women with ID aged 40 – 78 years

(mean age 49)


(mean age 49)


(mean age 51)


(mean age 51)

Sydney, New South Wales

Sydney, New South Wales

Prague, Czech Republic

Prague, Czech Republic


Type of residence

Women with ID, Sydney

Women with ID, Prague

Family 12 8

Group home / supported accommodation

8 16

Retirement village 1 1

Alone 2 1

With partner 2 1

With children 2 0


Marital status Women with ID, Sydney

Women with ID, Prague

Single 20 21

With partner 5 4

Engaged 1 1

Divorced 3 2

Married 1 0


Environment- handicapping behaviour of family- limited opportunities (employment, living arrangement)

Core phenomena

Lack of control over own life

Strategies- Pasivity - Discussions with close persons- Expressing their needs and wants - Becoming independent

Intervening conditions

- Attitudes of family towards independence of people with ID- Life experiences of participating women- Spirituality- Social network of women

Context- Intensity- Frequency- Level- Duration

Consequences

- Satisfaction with current situation- Not being aware of limited control over own life- Resignation- Independence

Intra-individual factors - disability- health

Causal conditions


Awareness of own disability„I did have a dream that I didn’t have any

disabilities. I was a normal person like you, because you don’t have disabilities, do you. You

don’t have disabilities. So I feel that if I start all over again, don’t have disabilities, have a normal life,

everything would be OK. I wouldn’t have much [sic] problems. But since I have a disability, I have some

problems, and some problems…my disability, I don’t feel happy about, you know? You’re lucky. You don’t have disabilities, you can do whatever

you like. It depends [on] what you do, but you don’t have any problems doing…“ (W21)


Health of participating women

„But I’ve still got to do the exercises because here it’s really sore and it really hurts, and

some days I can’t hardly move it because it’s really…and they told me that it’s going to be sore for the rest of my life. (…) And when it’s

wintertime it really aggravates me. It aggravates me more than during the summer

months.“ (W13)


Core phenomena






Consequences



Causal conditions



Handicapping behaviour of parents

„…I would rather say that she [mother] was worried about me and by these worries she sometimes underestimated me. I do not want to judge it…when she is dead. But that is what it was sometimes like.“

„Can you remember any situation like that?“

„They were afraid to let me go with my girlfriend for a holiday. Finally [my] parents found out that it is possible, so they allowed it… I was over twenty years old by then.“ (Z4)







Consequences



Causal conditions

Core phenomena



Limited opportunities for education and employment

„…for example, I know that education of children is much more difficult than…to help them. That is a bit different, education is more difficult. Even [sic] severity and so on, I would hardly manage that.“ (Z9)

„…actually, by the fact that I like very, very much small children, I would rather want to help them, for example, with getting dressed, accompanying them for walks or to play with them.“ (Z9)

„…I liked it there at the beginning as I had the feeling of being among children…but to get such work as cleaning, aside of the contact with children, that is a completely different job. I had a different idea, to be with children.“ (Z9)

Living arrangements


„They were talking about it and I was passing by them and they were saying „girls will go away“. I

turned around and said „where“? They said, “Nowhere”, so I went to the head of staff. I asked her why they are keeping a secret that we have to

go away, that they should tell us… I was told, “Well, we wanted to say it in a months’ time…” I said, “No

way, you are doing great mistake… When this is about us, do you live here or do we live here? You work here and we live here.“ I told her „you have to tell us. Look at the girls and what they are doing,

goggling at what is happening, the boxes, suitcases and so on.“ After that she announced it; she came

to the dining room and said it.“ (Z11)Women with Disabilities in a Globalised World; 10th August 2012; Iva Strnadová

„…we went to XY with our teacher…we had dinner and then we were even allowed to

split up and go shopping.“ (Z24)



Core phenomena




Consequences



Causal conditions




Parental style of up-bringing

„That was while mum was still alive. She used to tell me, you have to learn everything by yourself because you don’t know what can happen in the future.“ (Z1)

„And otherwise my mum, by teaching me to be so independent …she taught me a lot…“ (Z9)



Core phenomena





Consequences



Causal conditions



„No. No, I can’t do that. No. Mum, Mum…if I want to go out, I’ve got to talk to Mum about it, and she tells me if I can or not…we sometimes get into fights.“

„And who wins?“

„She does! [laughs] …Well, she’s older than me, anyway… Well, I’ve always said to her that I would like to do things on my own, but she won’t let me. She always says I’ve got to discuss it with her first. It’s hard.“ (W23)



Core phenomena






Consequences



Causal conditions

Consequences- Satisfaction with current situation- Not being aware of limited control over own life- Resignation- Independence


‘Women with intellectual disabilities becoming active researchers: Using iPads to facilitate research training’,

HREC 11114, University of New South Wales

‘Investigating the Coping Skills of Ageing Women with Intellectual Disabilities: Developing

a Strategy-Based Framework for Promoting Healthy Ageing’, Goldstar Award, UNSW/ARD


Research Focus

What factors influence active ageing in women with intellectual disabilities and thus strengthen these women’s satisfaction with their life?

Research team

4 academic researchers and 4 researchers with intellectual disabilities


Preliminary data analysis

• Social isolation, lack of friendships

• Lack of opportunities (employment, leisure time activities, community engagement)

• Increased vulnerability

• Underestimated by others

• Coming in terms with intellectual disability


Underestimated by others

“When I was younger, my doctor said to me you can’t do this, you can’t do that, you

haven’t got the personality, you haven’t got the brain.” You have got the brain. You can do what you want to do, and you can find a pen pal. Don’t listen to other people. Do

what you want to do.”


Preliminary data analysis

• Social isolation, lack of friendships

• Lack of opportunities (employment, leisure time activities, community engagement)

• Increased vulnerability

• Underestimated by others

• Coming in terms with intellectual disability


Coming in terms with intellectual disability

“I found out when my parents were alive. I found out that I had an intellectual disability. I know

now that I do. (…) It makes me feel sad sometimes. I wish I didn’t have an intellectual

disability. (…) It does stop me from doing certain things. (…) I didn’t want to come to terms with it.

I didn’t want to believe I had an intellectual disability, that I was different from others. But

then later, as I grew up, eventually I got told and I accepted it.”


• Awareness of own disability & coming in terms with it = role of stigma in society

• Limited opportunities

• Handicapping behaviour by others


Common experiences expressed in both studies

Recommendations for Parents

Need to encourage parents of people with ID:

• to prepare their children from a young age for as independent a life as possible (skills for daily living - travelling in public, decision-making);

• to allow their children to start to live their own life as soon as possible.


Recommendations for Service Providers

• Consider wishes of people with intellectual disabilities

• Variability in regards to living, employment and leisure time provisions

• Age-appropriate service


‘older women with disabilities, they have future as well…’ ageing women with intellectual...

Documents

globalised world

iva strnadovageing women

adult women

iva strnadovwomen

voices of women

older women

iva strnadovchallenges

iva strnadovprofessional