1. Dr. Mark Sherry We’re All The Same, Only Different: The Diverse Needs Of People With Brain Injuries

2. Paying Respects I want to begin by acknowledging the traditional owners of the land, both past and present.

3. We need to acknowledge the diversity of experiences that constitute brain injury – both medical and social, and the different risk factors that can place people at risk of brain injury. I’ll try to highlight some of these issues by referring to my own story, and also the experiences of others who I’ve known or interviewed. My main theme today

4. Brain Injuries are different medically Open or closed injury; Traumatic or non-traumatic injury; Injuries to different sections of the brain; How severe the injury is; How the person received their injury; Other injuries sustained at the time; Pre-injury characteristics of the person. HOWEVER, we often share many experiences too (both social experiences and physical results of the brain injury).

5. Some of the effects BEHAVIORAL/EMOTIONAL EFECTS Increased irritability & aggression; Poor social judgment; Inappropriate behaviour; Impulsivity; Emotional lability/apathy; Mood swings; Suspiciousness/paranoia; Disinhibition; Catastrophic reactions/ black and white thinking.

6. Reg Reg was 34 when I interviewed him. He’d had multiple brain injuries from fights. On one occasion, he had a fractured skull and an open head injury. “I smashed the right side of my face. The whole side of my face was out past my nose, just shattered, blood and guts everywhere”. Reg was 17 when he first had his injury and says “It’s amazing, hey? To think we’re survivors. We’ve gone through these things that should have killed us”. Reg has experienced brain injuries many times in fights – he is proud that many of the health professionals he’s dealt with have been “scared for their lives” around him.

7. Jay Jay, who was 28 at the time, talked to me at length about being someone who’d been described as having ‘challenging behaviour’. “Any one know any human beings who don’t have a bitch, or a say, about what they like, what they dislike, and what they want and don’t want for them? That’s all we’re doing mate. We’re made to, we’re called, yeah, challenged behaviour. You know. We speak inappropriately and that sort of thing. It’s crap! We say what’s on our mind and what we have (to say) is as important as any able-bodied person, if not more. Because we’re one up on them, we already have information given to us through our trials and tribulations of having a head injury.”

8. Kristen Kirsten was drunk-driving at the time of her accident, and this was a common experience for her at the time. Her comments about one worker at the hospital are quite typical of someone with a very serious frontal lobe injury. ‘‘Well after about a month I could have, not a problem, put a knife through her. It wouldn’t have bothered me. Yeah, I could have knifed her, it wouldn’t bother me.” Her anger wasn’t just directed at others, however. She also felt similar anger towards herself. “I wished I did die. I thought I don’t want to go though all this rot, I really don’t.”

9. Steven and Jill As a child, Steven was in a car accident which left him in a coma for a few days. His was a closed head injury. He subsequently developed temporal lobe epilepsy but it “wasn’t diagnosed until I was an adult”. He said that getting a diagnosis was actually “quite liberating” because he was “able to show, for example, my family, that there was something wrong”. An example of a non-traumatic brain injury: Jill had a cardiac arrest, leading to a hypoxic brain injury. She was variously labeled “slow to recover” and also “vegetative”. As such, she was placed in a nursing home and did not receive any rehabilitation for the first two years after her acquired brain injury. Jill was 45 when she had her heart attack.

10. Effects COGNITIVE DIFFICULTIES Attention, concentration; Memory; Planning and organization; Initiation and follow-through; Distractibility; Slowness in thinking and performance; Perseveration; Psychiatric illnesses; Problems with awareness of deficits.

11. Helen’s Cognitive Difficulties Helen, 47, explained some of her challenges to me. She’d been injured on her lunch break from work and feels she returned to work too soon. She explained to me some of the ways she has responded to her problems with memory – she uses a computer system to remind her of everything. Like many others with a brain injury, Helen’s personal relationships were strained because of her brain injury. She felt that her partner was quite unsupportive of her and the relationship suffered as a result.

12. Effects COMMUNICATION DIFFICULTIES Trouble finding the right words; Providing less essential information and more inessential information; Hearing problems; Reduced reading and visual comprehension; Nonsensical language; Difficulties understanding facial expressions.

13. John I first met John when he was in a nursing home, and I advocated for him and helped him get out of there. He’d been in a nursing home for8 years when I first met him. Many people with brain injuries and family members began to visit John as we advocated for him. John speaks with a very strong slur in his speech. I asked him what rehabilitation he’d had. “I’ve had none”, he said “apart from being here” (in the nursing home). He told me “I should have had speech therapy”.

14. Effects PHYSICAL EFFECTS Walking slower; Difficulties with balance; Difficulties co-coordinating arm, hand, leg and foot movements; Swallowing; Breathing; Seizures; Sleep disorders.

15. Larry Larry told me his story: “A drunk hit me. He T-boned me. Anyhow, I was going through an intersection, he went through a stop sign and T-boned me into the front left quarter of the car. And completely wiped out that front out. The. The front passenger went under the dash. She died instantly. The passenger behind her died later in hospital. There were only two survivors. I was in a coma for a week… I had to re-learn how to walk; I had to re-learn how to pronounce words again because of the paralysis down my left side. Because I had the injury on the right side of the brain.”

17. Stories from drunk drivers I’ve spoken with a number of drunk drivers who’ve been convicted with various offences, including manslaughter. Some of these have told me that it has been a really important part of their own journey to recognize that they are an “alcoholic” and to remember the victims every day. They often express an incredible mixture of emotion – self- blame, guilt, sometimes determination to make amends as much as possible, sometimes a blaze acceptance of their previous lifestyles, and so on.

18. Something unique to Ohio Ohio is the State where Alcoholics Anonymous was formed. This means that many people met Bill W. and Lois W. in their lifetime, and can recall stories from them. The mid-west area of the US is also heavily influenced by religion, and that in part explains the heavy influence of finding a connection with “the God of our understanding” in AA and Al-Anon programs. In Ohio, most substance abuse treatment services, and most psychiatric wards, adopt the Twelve Steps philosophy. This means that people are actively encouraged to call themselves (or their partners) ‘alcoholics’. This word, which is often avoided in other approaches to the problem, is central to the AA recovery program.

19. The medical model Most of the time, both professionals and survivors rely (to some degree) on the medical model to describe their experiences. However, one of the problems with the medical model is that it locates the problem of disability in the body or mind of the brain injury survivor. One of the things that can help overcome this problem is to simultaneously adopt a social model of disability, that highlights the barriers which limit that person’s rights and opportunities.

20. Also Brain injury survivors can differ in terms of: Age (A pediatric injury is so different from one experienced by an elderly person, or one experienced by someone in their mid-twenties). Financial resources (Insurance status, compensation, and overall socioeconomic position means some people have access to more options in rehab, community living, etc). Gender (the nature and cause of brain injury is incredibly different for men and for women). Rural/Urban location (This greatly affects access to, and availability of, services). Visibility of the injury (There are advantages and disadvantages to both invisible and visible injuries).

21. Common Social Experiences As well as having similar physical and cognitive challenges, people with brain injuries often share common experiences of social exclusion, inadequate supports, denial of rights, and discrimination. Some of these problems include: Problems with admission (e.g. being sent to a ‘geriatric’ ward or not being screened properly). As one woman who’d been in a ‘geriatric’ ward commented to me, “It’s depressing and I just thought ‘Just let me out, I’ll do it myself. I thought, how am I supposed to progress in rehabilitation when I’ve got to look at this?” Problems with diagnosis (especially for people with ‘mild’ injuries whose injuries are underestimated, and for people labeled ‘slow to recover’ or ‘vegetative’ who are often given an overly negative prognosis). Madonna, who was given the label ‘vegetative’, told me that she would like to kick the doctor who gave her that diagnosis.

22. Common social experiences Exclusionary eligibility criteria from agencies when people are looking for services and supports. As one man said to me “We are sort of discarded; we’re shoved under the bloody carpet; we’re a non-person”; Lack of adequate community living options and over-reliance on nursing homes as a dumping ground for younger people; Inadequate staff training to deal with the specific challenges of brain injury (“These jokers don’t realise how much harm they do by not helping people”); Lack of access to appropriate vocational and rehab programs (e.g. for behavioral support or skills training);

23. Common Social Experiences (Cont.) Lack of crisis management supports or programs; Shortage of respite care; Public misunderstanding and ignorance about brain injuries; Lack of support for carers; Transport problems; Social Isolation; Unemployment; Inadequate or completely absent recreation options; Lack of accessible information; Lack of co-ordination for information, support, and services; Unfunded, and under-funded, peer programs; Lack of transitional supports.

24. But… we need to move beyond simply reforming the service system It is really important to remember that brain injury is not evenly distributed among the population. It happens more to certain people than others, and that’s incredibly important when we think about prevention in particular. We need to engage in broader social change, for instance, challenging ideas that equate working class masculinity with toughness, alcohol and substance use, fighting, and so on. I mention “working class” people because brain injuries of all sorts (TBI,stroke, near-drowning, etc) happen more often among poor people. For those of you looking for a practice implication, if you are not working mostly with poor people, perhaps you are under-serving this community.

25. We also need to look at abuse Abuse is a cause of brain injuries for particular sub-groups of people. In particular, women and children are at great risk for violently-induced brain injuries, through domestic violence. Sexual abuse is also commonly targeted at women and kids. Many gay people also experience unique risks for violence in relationships and this is an incredibly under-recognized problem. Few brain injury organizations even have a brochure on violence in gay relationships. There is also a very high level of physical and sexual abuse among Aboriginal communities. I would like to remind people that half the Aboriginal population does not live in rural and remote communities, so you should be connecting with them in major cities. Again, if your clientele in the city does not include a representative sample of this group, you need to be doing things to connect to that community. A practice implication is that you should always be screening for a history of abuse, because it often feeds various forms of risky behaviours, self-esteem problems, feelings of powerlessness, and difficulty believing things can change. All of these feelings are incredibly important in a recovery process.

26. We need to look at the full spectrum of sexuality too There are many reasons why we need to examine various types of sexuality in relation to brain injury: People who acquire brain injuries can have many sexual orientations and inclinations; People with queer sexual practices may be at particular risk of AIDS (and its associated loss of neurological functioning); Homophobic violence leads to many brain injuries (and deaths) and requires particular strategies and educational programs to combat it.

27. We need to look at race and ethnicity too Of course people for whom English is a second language, or who rely on a language other than English, experience particular barriers both in help-seeking behaviours and in general interactions with the health and service system; Likewise, Aboriginal people experience various cultural barriers, and practices of discrimination that limit their access to assistance; However, we also need to identify particular groups among “white” people who are at risk (e.g. the culture of drinking among people of Irish extraction).

28. We must also remember People with exactly the same part of their brains injured can interpret the experience very differently. Likewise, people with similar experiences of social marginalization can make sense of that in fundamentally different ways. Brain injury (and social exclusion) make up a big part of some people’s identities, but a small part of others. For some people, it is important to connect the experience of brain injury to the rest of their lives. For others, it is equally important NOT to do that. Brain injury survivors are indeed a diverse group!