Dr' Mark Sherry

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Were All The Same, Only Different The Diverse
Needs Of People With Brain Injuries

• Dr. Mark Sherry

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Paying Respects

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

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My main theme today

• 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. Ill try to highlight some of these
  issues by referring to my own story, and also the
  experiences of others who Ive known or
  interviewed.

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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).

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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.

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Reg

• Reg was 34 when I interviewed him. Hed 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
  Its amazing, hey? To think were survivors.
  Weve 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 hes dealt with have
  been scared for their lives around him.

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Jay

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

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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 wouldnt have bothered me.
  Yeah, I could have knifed her, it wouldnt bother
  me. Her anger wasnt just directed at others,
  however. She also felt similar anger towards
  herself. I wished I did die. I thought I dont
  want to go though all this rot, I really dont.

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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 wasnt 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.

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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.

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Helens Cognitive Difficulties

• Helen, 47, explained some of her challenges to
  me. Shed 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, Helens
  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.

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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.

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John

• I first met John when he was in a nursing home,
  and I advocated for him and helped him get out of
  there. Hed 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 hed had.
  Ive had none, he said apart from being here
  (in the nursing home). He told me I should have
  had speech therapy.

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Effects

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

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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.

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Stories from drunk drivers

• Ive spoken with a number of drunk drivers whove
  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.

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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.

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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 persons rights and opportunities.

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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).

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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 whod been in a geriatric ward
  commented to me, Its depressing and I just
  thought Just let me out, Ill do it myself. I
  thought, how am I supposed to progress in
  rehabilitation when Ive 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.

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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 were shoved under the bloody carpet
  were 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 dont 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)

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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.

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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 thats 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.

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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.

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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.

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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).

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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 peoples 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!