Hearing Loss As A Public Health Issue: Challenges And Strategies 

By Robert Alexander
President, Ontario Chapter Canadian Hard of Hearing Association and Community Health Officer, Toronto Public Health

I shall begin my presentation by describing elements of a public health approach: healthy public policy and health promotion (community development.) I shall then discuss the intersection of these two, and then relate that to access and equity for disabled persons with particular focus on hard of hearing population.

This will be followed by a consideration of some mental issues again focusing on the hard of hearing population.

Note: this will be done from the perspective and within the context of the presenter’s personal experience as a professional community development worker in the public health field and who has worn hearing aids for the past 6 years.

Introduction to presenter

Let me describe in more detail my own personal background as the context and experience for what follows:

1. Have been involved in community development work for most of the past 35+ years.
2. Employed by City of Toronto Public Health since 1985 as Community Health Officer with responsibilities for community development in a variety of issue and geographical communities.
3. Currently engaged in access and equity initiatives for disabled persons at both the Divisional (Public Health) and Corporate (City of Toronto) levels.
4. First diagnosed with progressive bilateral hearing loss in 1988; prescribed and received first hearing aids in 1998.
5. Member of Board of Ontario Chapter, Canadian Hard of Hearing Association (President since 2002.)
6. Engaged in 2002-03 in Ontario-wide consultation process about the concerns of hard of hearing persons, and the role of the Chapter; on basis of input have drafted first strategic plan for the Chapter to be presented to the members at meeting in October.
7. Have also reviewed and provided informal response to the Working Paper by Mexico on "Comprehensive and integral international convention to promote the rights and dignity of persons with disabilities" presented to the United Nations ad hoc Committee in 2002.

I offer these not just as a basis for my claim to some degree of expertise in this area; but more importantly to emphasize the framework in which I have gained some experience, and therefore the source for the comments that follow.

Please note that whereas I was at one time involved in community development in the area of mental health issues, I do not consider myself a specialist in that area.

Public Health

Today, much of the focus in public health (PH) is on population health: i.e. the concept that of furthering, protecting and nurturing the health of any group of individuals is done through an approach that focuses on the health of the entire group. A second principle is that of the determinants of health: that without the basic necessities of existence, security and dignity, the health of a community or any group within it is compromised.

A third principal of PH (and one I want to focus on) is that of health promotion: that it is not enough to give people information about what constitutes healthy living although it is certainly crucial to do so. In addition, however one must also help a community, and thus the individuals within it to have the wherewithal, the resources to be able to follow the healthy living guidelines. Example: when information is given about what the healthy nutrition guidelines are, if these guidelines are inaccessible for any in the community that does not promote their health. So if a hard of hearing person attends an oral presentation, and no accommodation is provided, then that person’s health is not being promoted. This inaccessibility may also be caused by barriers due to language or culture, physical mobility limitations, lack of financial resources, unavailability of resources in a neighbourhood, etc.

Public health, which is a fundamental basis for the approach to my work in and with the hard of hearing community, has two primary aspects:

• Healthy public policy; and
• Health promotion or community development.

It is these two pillars of public health that I wish to focus on.

But first some general comments:

1. The health consequences of any policy framework are factors not just of the content of the policy, but the process of establishing, implementing, evaluating and modifying those policies.
2. My experience within the theme of this conference is limited primarily to my work with the hard of hearing, as distinct from the deaf (particularly the cultural deaf) not only because that is my personal experience, but also because the hard of hearing population has a lot to learn from, and a great deal of catching up to do with the "Big-D" Deaf community regarding the need to have our issues (those that are distinct from the Deaf community) on the public agenda. Not that the Deaf have everything they need; and we have nothing; nor that I begrudge any benefits that they have worked hard to establish. Only that the two communities have very different – if related, and with some overlap – needs, concerns and issues.
3. Please note that my focus here (or at least the context for my remarks) is on public policies as enacted by a municipal government. My discussion will have applicability, with some alterations, for the various levels of government, or even international structures, as well as within the private sphere as well.

The elements of a healthy public policy include:

1. Auditing for health impacts, positive and negative, of individuals, the community, and, where appropriate, society as a whole. This examination must involve evidence-based considerations as distinct from strict scientific proof; the basic criterion here must be that of the pre-cautionary principle (that requires that the burden of proof is on proving that there are no health costs before permitting, rather than having to prove harm before disallowing, the activity.)  
   
   It is important that the policy be defensible. It will be tested, especially if it is, or is seen as, intrusive by the guardians of individual rights or commercial interests. So while the need for scientific "proof" is often too high a boundary for reasonable action, the policy must rest on good science (i.e. the evidence must be real and demonstrable) and not based solely on suspicions, hunches, or non-rational beliefs, as this risks discrediting the entire process.
2. Real public input at various points in the process, which must include a full explanation and debate about the health implications. This can be messy and cumbersome (as all democracy is), especially in the case of an urgent issue. But the outcomes of public consultation are manifold: the people affected get their concerns, and their ideas, aired; they can have a creative and constructive impact on the outcomes; the "experts" have a chance to have their concerns heard and discussed so that they are better understood by the community; finally, if people are consulted and perceive that they are heard and taken seriously, they are much more likely to be able to accept the outcome, even if it does not agree fully with their own positions.
   
   The input must be open, democratic, accessible, and equitable.
3. Being reactive and pro-active – it is important that City officials (as in other levels of government) must show leadership while also being prepared to respond to concerns and ideas of citizens.
4. Being subject to trial periods, and be open to evaluation and re-consideration. They should in fact be reviewed on a periodic basis.
5. Roles for:

Community & NGO’s: raise questions, issues; provide information, data; work strategically to resolve the issue, concern or problem;

Civil service: take community concerns and translate them into policy issues; undertake and/or collect research, provide information, data (health impacts, quantifiable or anecdotal); prepare scenarios of consequences of acting/not acting; prepare a full list of alternative actions – explain policy possibilities and limitations (e.g. jurisdictional boundaries) to the public and to politicians; bring into dialogue all relevant groups – pubic and private;

Politicians: develop, publicize and implement structures and processes of information dialogue with the public; consider health as well as political consequences of acting/not acting; identify, work strategically with allies and opponents; listen to all sides, but not at the expense of acting; take leadership and act in public interest.

NOTE: Let me underline that healthy public policy is a matter of the process as well as the content.

Community Development

Community development (CD) is now often referred to as "community capacity building" (CCB); I am of the old school and hold that CCB is only one aspect, albeit a very important one, of CD.

My definition: CD is the process whereby a community of people recognize and establish their commonalities as a community, and work collectively to develop some processes and possibly some structures to a) understand their needs and their strengths; b) identify what gaps they need to fill; and c) develop strategies to establish, monitor, and evaluate services to fill these gaps.

Note: CD in my experience –

• Focuses on gaps (this is usually what mobilizes a community, not their strengths or existing benefits)
• Often requires direct assistance and direction from someone with CD experience or skills (I admit this is a bias as a "professional" CD worker.)

Comments about health promotion (HP):

• WHO definition of health promotion (my interpretation): enabling a community to identify its needs and to be able to take control of the strategies to meet those needs.
• A community that is organized and able to act is, by definition, a healthier community.
• Even if organized around a single issue, an organized community, by virtue of that organization, benefits beyond the resolution of that issue.
• So the action of a community organizing itself/being organized is in fact a health-enhancing enterprise.

1. Perhaps the most critical problem is that of ensuring that the very specific accommodations and equity needs of the hard of hearing, is to distinguish those as being distinct from those of the cultural deaf, and get our issues on the public policy agenda (without setting up any sense of competition or rivalry with other groups.)

So it is vitally important that the hard of hearing community become better organized in order to:

• Model and encourage acceptance in both the individual and the public of the identification of the condition and overcome the stigmatization that many feel at the "label";
• Promote awareness among the hard of hearing of our rights;
• Provide a community for the policy makers to consult;
• Provide a cohesive group to identify and fight for our needs and concerns.

Mental health and hearing loss: some related comments

I am at somewhat of a disadvantage here as I am not a mental health professional; in particular, though I have had experience in the past in organizing mental health services for persons with linguistic and cultural barriers, I have had very little direct involvement in direct service delivery to persons with MH problems (the exception being many years ago when I worked in the addictions field and did some counselling of those with alcoholism problems.)

Given that caveat, let me make some personally derived observations about the issue of a public health approach to the issues faced by hard of hearing persons with MH problems:

1. Hearing loss can by itself bring on MH issues, and can certainly exacerbate any MH existing or latent in the individual;
2. It is my experience that it is very difficult to organize directly the MH population; except there have been some stellar examples of organizing by those within that community. Certainly there are numerous examples of successful organizing into networks, coalitions and the like among the staff of agencies and organizations who work with that population.
3. It seems to me that the major issue in this area is that of accessibility, whether it be drop-in centres, housing, counselling, medication monitoring or other MH-specific services/programs; or in more mainstream medical, social or human services.
4. Re: counselling, since this is primarily based upon verbal communication the issue of accommodation is absolutely crucial, obviously it cannot work at all unless the participants can understand each other conversationally.
5. I would maintain – although I am ready to be corrected by those with more direct experience here - that perhaps other than the question of reliable information about their needs, and concerns about who really speaks for this group, the main points I have made above about a public health approach applies to this community as well as any other.

Summary

In the final analysis the issues really involve being treated with respect, and having the same opportunity to take advantage of the full range of services, programs, activities, and having the same opportunities to contribute to both the private and public spheres of society. These opportunities will have their limitations; but we must never simply fall back on that assumption: we are finding ways all the time to break down the barriers and eliminate the limitations. This may mean equity: i.e. differential treatment so that outcomes are the same, as distinct from equality, in which everyone is treated the same.

Understanding too that attitudes – those of the public in general as well as those of the members of the particular communities – cannot, and will not, change through legislation.

But behaviour can, and must, change; and behaviour can be legislated. We also know that in many instances, attitude change follows behaviour change.

The members of the community, in this case that of the hard of hearing and deaf, are experts on our needs, problems, concerns; as well on our hopes and aspirations and our strengths and gifts. There are professionals, technicians, etc. who may along with the community be the experts on the most effective accommodation strategies. The two groups can and must work together to solve the problems and overcome the barriers. And, of course, policies need to be in place to ensure the solutions are available to all who need them, as we need them.

These are the principles that good, healthy public policy must bear in mind; they are in fact, the elements of an effective public health approach to hearing loss.

I want to make one final comment. Much of the attention in Canada has been on the human rights approach. This is absolutely crucial to ensure that policies are followed, and especially to overcome the inattention, inertia, resistance and outright unwillingness of structures and individuals to change. It does require, and goes hand in hand with policies (and legislation and regulations, etc.) and is therefore inextricably bound up with the public health approach.

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