Deafblindness And Mental Health:

By Bolduc, Daniel (psychologist) dbolduc@raymond-dewar.gouv.qc.ca ; 
Brissette, Lyne (social worker) lbrissette@raymond-dewar.gouv.qc.ca ; and 
Lefebvre, Gilles (deafblindness counsellor) glefebvre@raymond-dewar.gouv.qc.ca at Institut Raymond-Dewar ⁽¹⁾, Montreal.

However, keeping one’s mental health poses a considerable challenge for a person living through a double sensory loss.

Deaf-blindness may generate numerous consequences in many spheres of one’s life. However, of the spheres affected, mental health is by all means one of the most important. In part, deaf-blindness brings about psychological consequences. While certain people succeed in regaining a new balance, others can no longer operate normally. Thus one can call this a mental health problem and, in certain cases, a psychopathological problem.

As interveners in a rehabilitation program, we are witnesses to our clients’ distress and we question ourselves about our practices in aiding these people to regain some feeling of control over their lives. Here, we will mainly highlight adult clients with acquired deaf-blindness.

The impoverishment of access to sound and visual information results in severe consequences, and this impacts on the ability to communicate and maintain social contacts. The social network gradually breaks down, some friends distance themselves. These impacts vary with the influence of multiple factors: age, the mode of communication, being a part of the Deaf culture or not, the nature of the sensory loss, the education level, the revenue, the social network, employment, personality, etc.

The loss is abundant: no longer being able to enjoy certain activities (reading the newspaper, listening to music), losing one’s autonomy (no longer being able to drive one’s car), no longer being able to stay busy at work, etc. Deaf-blind people tell us that they feel out of synch with what is happening in their immediate environment and in the greater community. A person may then feel frustration, injustice, sorrow, a lower self-esteem, anxiety, etc. They must accommodate these emotions, manage them and find ways to constantly adapt to their new sensory condition.

Certain deaf-blind people do not feel comfortable either in the Deaf community, or with the hearing community. This will nurture an examination of identity and will bring about challenges.

The adaptation may vary according to the magnitude of the loss, life experiences, and the quality of resources available to the person. In the best of cases, they will succeed in adapting to their losses and in overcoming the various difficulties which they will face. Others will be at risk of developing mental health problems.

The progression of sensory disabilities will greatly affect the dynamics with the family and friends of the deaf-blind individual, who will need to deal with the inequality of sharing, their fears, frustrations, stress and uncertainty about the future. These individuals may mourn the loss of social life or of satisfactory communication, which poses an emotional impact. For example, the spouse or family may see social contacts diminish because the deaf-blind person can barely take part in group conversations, no longer feels any pleasure or fears belittlement or inadequacy.

Therefore, it is possible to help the deaf-blind individual without considering their place, role and function in the family. For example, some deaf-blind parents may be brought to have great expectations with respect to the responsibilities their children must undertake. The parent will need to rediscover a feeling of competence in exercising their role or in using community resources to mitigate certain disabilities. Friends and family must be supported in understanding and adapting to the fact that the rhythm and needs of the deaf-blind individual are no longer the same, rather that they can and must continue activities within their abilities. Among other things, the family system must manage to satisfactorily negotiate balanced functioning rules. Information must still circulate between individuals through the use of new means.

In order to fight anxiety, a family system which has failed to adapt could adopt counterproductive attitudes: overprotection, denial of loss, low self-esteem of the deaf-blind individual, psychological burnout of natural caretakers, etc. Stress may also exacerbate pre-existing difficulties in the family or marital dynamics: situations of rejection, divorce, or conflict which will then contribute to the isolation of the deaf-blind individual and further weaken his or her mental health.

It may be long and difficult in coming to a good comprehension of the mental health problem by forming the right hypothesis and coming to a diagnosis. That which may seem to be a hallucination is possibly the result of a distorted perception of sound and visual information. Among other things, certain people living with anxiety have difficulty interpreting the changes in light, colour, moving objects, etc.⁽³⁾ These illusions may be interpreted as a threat. These beliefs or misconceptions may crystallize and further increase anxiety. Facing a world where they perceive less and less, an uncertain future and the loss of autonomy, the person may develop a growing intolerance towards uncertainty (generalized anxiety troubles). The ability to see and hear, that allowed the person to exercise judgement, no longer allows the same contact with reality; the person is no longer able to distinguish what is due to imagination (internal stimulus) or to reality (external stimulus). Reality is perceived in a fragmented and selective manner; the person may establish false cause and links to behavioural consequences.

Having only few exchanges with others and becoming impervious to feedback due to difficulties in communication and perception, the person looses perspective on their relational life. Emotions take over, thought has difficulty structuring itself and the "interior monologue" takes over.

The loss of hearing and vision inevitably generates more or less intense emotional reactions. The individual may sometimes be weakened by one incapacity and then secondly hit by another. This process may repeat itself throughout life since, for many people, those losses make themselves felt in a progressive fashion or even by stages.

Being less stimulated or challenged by what is happening in their environment, some deaf-blind individuals may sink into a lack of interest or into a state of lethargy. There is also the risk of a major depression disorder occurring. Here, one can find individuals with unresolved grieving over sensory loss, which may linger on or continue, depending on the evolution of the syndrome. The clinical picture of major depression may be more or less severe and be coupled with problems of alcohol and drug abuse, suicidal ideas and, in some cases, suicide attempts.

In some individuals, obsession and compulsion surrounding doubt and verification (obsessive-compulsive disorder) may also appear, as well as peaks of extreme anxiety causing panic disorders with agoraphobia and possibly culminating in a panic attack.

In less frequent cases, there appears to be psychotic-related symptoms. In this way, people with almost no hearing and vision find themselves with visual and/or auditory hallucinations. Others entertain delirious persecution ideas, disorienting themselves or adopting aggressive and socially unacceptable behaviours. Eventually, they may build a threatening understanding of reality for themselves. We are then presented with a delirium disorder.

It has not been clearly established why a deaf-blind individual comes to posses such severe symptoms. It seems, however, that this may be, in part, the result of the double sensory deficiency because the symptoms seem to diminish when the person is encouraged and isolation is reduced.

Research clearly indicates that sensory deprivation may encourage the appearance of hallucinations⁽⁴⁾. This phenomenon has been observed in sensory deprivation experiments with normal subjects and with individuals who have lost their vision or a limb. A person stricken with a double sensory disability may then find it difficult to distinguish between reality and hallucination. Combined with social isolation, this may cause deviant behaviour and disorientation.

The treatment of mental illnesses in an acute phase raises the level of psychiatry. We must provide mental health services: prevention, support to psychiatric treatment and rehabilitation.

Prevention: Our role in the rehabilitation centre is to reduce the effects of the double sensory disability in order to ensure the maximum use of the individual’s abilities, including mental abilities (cognitive, affective and relational). One of the favoured means is the development of new skills for the person to be able to maintain their social participation (LSQ/ASL, Braille, communication strategies, orientation and mobility strategies, redesign of responsibilities with the couple and the family, etc.).

Psychiatric treatment support: We are equally called upon to support psychiatric workers because of the great difficulties in communicating with deaf-blind individuals: their need of an adapted mode of communication, the link of confidence already established, and our knowledge of adapted resources. Hospital workers often say that they are without resources for members of the Deaf-blind and Deaf cultures. Moreover, the need for and the right to gesture interpretation services are not always recognized and we sometimes need to support our client in exercising this right.

Rehabilitation: Psychiatric services (which are not specialized in deafness or deaf-blindness) for deaf individuals who communicate in sign language, usually involves some medication and a more or less regular regimen which allows for a decrease in certain symptoms. It is, however, important to remain involved in their life environment to defuse anxiety prone situations, because the deaf-blind individual still needs comforting support. Ultimately, the person must also realize that, despite the impact of their disabilities, they still have the ability to understand, to influence and to set goals.

Background: Rémi is a 40 year old deaf-blind man who communicates in LSQ. He has accumulated educational retardation despite his good intellectual potential. Rémi exhibited behavioural problems in adolescence and was marginally integrated into the Deaf community. His visual disability, resulting from Usher’s syndrome, was diagnosed only when he was 18.

In his adult years, he was an autonomous individual and worked for ten years, which was very important to him. Workplace injuries and his visual loss resulted in the loss of his job. He expressed feelings of distress and suicidal ideation. He lived for a few years in a period of heavy alcohol and drug consumption. The allocation of a guide dog provided a positive factor in both his affectivity and his security levels. Rémi is readjusting to a certain extent; he functions well in his ordinary apartment. His suicidal ideation is no longer present. However, he has few friends after the break-up of a significant relationship.

Development of Symptoms: Gradually, Rémi has felt insecure and afraid to be alone, and imagines intruders in his home, smells smoke, etc. His asks to move to a new home. He wants to get a surveillance camera. He complaints about the presence of a small monkey that touches him and hides. He tries to scare it away and this is disturbing for the neighbours.

Hypotheses of precipitating factors: New visual loss, the loss of his important friend, the increase of isolation, the lack of activity, the bad communication with the caretaker all create tension.

• Help him to express his suffering, even if he is reluctant to do so in an interview. Question caretakers on the preferred means to allow expression of and access to emotion of the member of the Deaf culture. (how to turn his interest for art and animals into advantages in therapy?).

• Communication and Information: Rémi only has partial perception of information, thus he interprets things in a biased way. Therefore, it is necessary to remedy this by providing him with additional explanation in order to decrease his anxiety. For example, his glared and pocketed vision must be reinterpreted as non-threatening elements.

• In order to breakthrough psychological isolation, help him to meet people with similar experiences and with deaf-blind individuals who are positive role models.
• Identification of Interests and Challenges: Learning Braille, French and about computers. Symptoms lessen with leisure and manual activities.
• Psychiatric follow-up, medication, information and discussion on the side effects of drugs. He periodically questions the relevance of medication.
• Family support.

• Stopped living alone (possibly temporarily). Apartment search in order to live autonomously but without being isolated.

Present Status: Rémi continues to take low-dosage anti-psychotic medication. He is more active and is involved in rewarding activities. He generally functions better, and sometimes, realizes that his vision "tricks" him. However, he remains fragile and a symptomatic reoccurrence may be observed in situations of incomprehension or stress.

A 50 year old lady with Type 1 Usher’s syndrome (profound congenital deafness and pigmentary retinitis), functionally sighted with 7-degree peripheral vision. Communicates using LSQ (Quebec Sign Language).

Mother of two adult children. Has been living alone for 6 years, far from her family, in a low rent residence for blind people, where she is the only person who communicates in LSQ. Social Isolation.

Some neighbours complain that she cries at night, hitting the walls and floor of her apartment, and think that she might be in danger.

We met with her to express her neighbours’ concerns. She explained that she hears noises in her right ear at bed time and that she believes that someone is trying to break into her place or that her neighbours are having a party. She shows the floor and the walls where the noises come from. She says that she is afraid. She bangs on the floor and the walls to tell her neighbours to calm down. She perceived these noises repeatedly over the last two weeks.

After investigating with the neighbours, it appears that the nights remain relatively calm in the building, except for those where she yells and makes noises herself.

• a real presence of noises in the environment?
• tinnitus?
• auditory hallucinations?
• need for attention or social contacts with caretakers? Social isolation?
• expression of some discomfort?
• other cause?

• We report to the lady with the results of our investigation which suggest that there are noises other than those made by her neighbours. By identifying their source, it is possible to control two sound sources in her environment.
• An audiology appointment helps her to understand that tinnitus is not caused by a sound stimulus in her environment. This is a concept that is hard to understand for a person who has no concept of a hearing person.
• She experiences the auditory phenomenon that she complained about in a different environment, which both worries her and reassures her.
• Discussions and co-operation with the person responsible for complaints in the building in order to avoid eviction.
• A visit is made to a Deaf community centre in order to diminish isolation.
• Meetings are proposed so that she can express what bothers her, because there is a repetition in her calls for help.

Now she can control two sound sources in her environment. Her episodes of noises and cries have decreased a lot, but still reoccur sometimes. She will need additional support to integrate herself into the Deaf community organization. For the time being, she calls on us in certain times of distress, but little attention has been given to other aspects of her difficulties linked to mourning, self-esteem and functional needs due to her great resistance and fear of being treated as a child.

One descriptive study⁽⁵⁾ of the clientele served at the Deaf-blind Program carried out in 1993 indicates that, between 20% and 27% of people experience mental health problems. These results are based on data collected from 117 clients. However, these results must be interpreted conservatively, because the methodology used to identify the presence of a mental health problem is not clearly described. On the other hand, this same study reports that 12% of the clients were consuming psychotropes (10.3% anxiolytics and 1.7% antipsychotic drugs). What is today’s status?

The hearing and vision loss, whether it happens progressively or suddenly, whether partially or totally, has an absolute certain impact on the psychological level. This impact may be modulated by the magnitude of the loss, the personal resources of the individual, the support received from the individual’s social network, as well as the community or professional services that they may be receiving. This last factor may be even more crucial for people with limited resources or for those who experience a mental health problem.

It remains that, even if appropriate action and a lot of effort and determination allow the deaf-blind person to live better in their situation, their personal endeavour will make the individual question their values and make sense of what they are going through for themselves.

A comprehensive analysis of the needs of deaf-blind individuals and the diversified adaptive measures needed in order to close the gap in information, to re-establish communications, to penetrate isolation and to allow access to emotions. An approach towards the individual close to the family and the group make it possible to meet numerous needs: individual interventions to reduce psychological distress and isolation, information, stress management workshops, support groups to prevent or mitigate the psychological reactions related to the losses, awareness workshops on double sensory loss for friends and family of the deaf-blind individual, etc.

Advocate an approach based on the self-determination of the person; the individual must identify their abilities and interests, sometimes developing other more realistic ones, developing new abilities and ultimately living positive life experiences.

Development of resources accommodating deaf-blind individuals; work, education, recreation, supervised apartment or emergency housing, etc.

Complementary action between the rehabilitation and hospital environments: psychiatric follow-up, counselling by caretakers with a psychiatrist, accompaniment for counselling or emergencies, etc.

Training for caretakers to better intervene with people exhibiting psychotic symptoms or suicidal ideation.

Continue research on the prevalence of mental health problems in deaf-blind individuals and on the type of care to advocate.

1. Centre de réadaptation spécialisé en surdité et en communication, the IRD is a specialized rehabilitation centre for deafness and communication that is a part of Quebec's public network of Health and Social services. It includes a multidisciplinary deafblindness team comprised of audiologists, one deafblindess counsellor, educators, one speech-and language therapist, one psychologist, and one social worker.
2. Fortin, Bruno. Intervenir en santé mentale. Fidès, 1997.
3. Syndrome de Charles Bonnet Teunisse RJ, Cruysberg JR, Hoefnagels WH, Verbeek AL, Zitman FG: Visual hallucinations in psychologically normal people: Charles Bonnet’s syndrome. Lancet 1996; 347:794–797
4. Sauerburger, Dona. Independence without sight or sound. A.F.B.
5. Grimard, C., Dupuis, J.-L et Lord, L. (1993). Le programme Surdicécité de l’Institut Raymond-Dewar : étude descriptive des caractéristiques et besoins de la clientèle adulte. Institut Raymond-Dewar, Montréal, juin 1993.