USBLN Keynote Presentation

USBLN Keynote Presentation

September 18, 2009

This has been a great conference, happy to be a part of it. I have been involved with disability advocacy work for many years, but this is my first USBLN conference. My congratulations and appreciation to the organizers, particularly to John Kemp for giving me this opportunity to speak today.

There are a few topics I would like to cover, and my hope is to offer some insights and suggestions that are both practical to implement and compelling. Being the final speaker, the compelling part is particularly necessary.

My first recommendation is a very special one.

If you do not have a disability and you hear that something is "special" you might think it was:

-Singularly unique

-Distinctive, or perhaps

-Of exceptional worth or value

Like many who identify with the community of people with disabilities from a young age, I was told that I was "special." This included the special school I attended for the first few years, the reason why the local newspaper featured me in the Sunday living section, the wheelchair I used after a broken bone or surgery, the place where I received healthcare, and the various adapted activities I engaged in. By the time I was in First Grade, I knew that special if you have a disabilityhad a different connotation:

-Different from your peers

-Worthy of prayer or divine intervention (there but for the grace..)

-And unfortunately, less than what is expected of others

Fifty years later, we stillcommonly use special to describe the ways our society holds people with disabilities, and the associated products, services, and activities we engage in. The intent was and is to depict these things in a positive light, the reality is that if you are special enough to be periodically featured in the Living or Community section of your newspaper, whatever health condition you are managing is the least of your worries. You have now entered a world where people are either characterized by society as poor souls who are dependent on others, or inspirational heroes who make those who don't have a disability shake off their worries and say, "If they can do X, (fill in the blank activity), why then I should stop feeling sorry for myself and do more with my life!"

Back in 1991 I wrote a chapter for a book called, The Promise of Diversity, entitled, "Reflections on the Not So Level Playing Field."It was about my experiences of attending various kinds of business conferences. As a short statured young (at the time), woman with a cane, I would notice who saw me as a gnome (scary), leprechaun, (lucky), or extraterrestrial (fascinating). These pop culture images (all of them very special mind you), impacted my conversations and experiences. Thankfully today we have reality TV voyeurism which allows us to watch people who are different from us do ordinary things in their lives thereby rendering them less special. My family and I are eternally grateful to the Roloff family in Little People Big World which often appears on cable TV. Thanks to this opportunity to the day-to-day world of an ordinary family, where the parents and one of the 4 children are short-statured, our experiences with the general public have been much improved. We are now often mistaken for the Roloffs, although we don't look anything like them, but hey, we aren't gnomes, leprechauns, ET, or anything else that is all that special anymore.

Suggestion #1: Avoid the word special when referring to things related to disability. We have done a good job of eradicating handicapped, crippled, confined, afflicted, and various other damaging words to describe people with disabilities, let's go the distance and work on this last word that damages self esteem and sets people apart who, as Ted Kennedy said, "have something."

You will note that during my remarks I will refer to people with disabilities and also use the term "differently able." For firms that have a global footprint, you may want to consider adopting Differently Able which translates better in many languages. Unfortunately "disability" in some languages translates as not valued or less valued.

And speaking of special education, how many here today remember what you learned as a Freshman or Sophomore in College? Do you think you are using anything you learned then today? Those first two years in college are commonly referred to as "general education" or core classes, and the fact that most of us have no recollection of the content should teach us an important lesson about how we train our managers in our work place. General education about any subject, including how to recruit, hire, retain, develop, accommodate and include people with disabilities, is best offered in very practical, bite-sized pieces as they are about to be used, vs. via a generic inoculation of awareness building. At Merck we offer information on-line that can be easily accessed by a manager at the time they need it: when they are interviewing, hiring, accommodating, welcoming back from leave or conducting some other transaction that includes a person with a disability. Adult learners prefer quick learning hits that are focused on practical subjects in an easy to find place like a website on your intranet. That is not to say you don't need to set the right tone with a compelling business case up front. We have done that with a short video that has an executive speaking about the importance of including people with disabilities in our workforce and the critical role they play as consumers, particularly for us since as a health care company this population is a key element of our marketplace. This type of tone-setting communication can then lead people to practical resources on a site that also includes things like:

-accommodation processes, resources and tools

-site-based contacts who can assist like Security, Health, Safety and HR

-community based resources by disability type

-language/etiquette do's and don'ts

-emergency evacuation guidelines

-additional training resources that help to understand specific types of disabilities

Suggestion #2: Keep general awareness training to a minimum beyond the business case. Invest in practical just-in-time tools and information that can be accessed by managers and employees as needed.

OK, so now that you have employees who are differently able, and have provided them (if requested) with any needed accommodations, what's next?

Those of us who are baby boomers remember all too well what it was like to obtain and retain meaningful employment as a person with a disability in the 70's, 80's and 90's. As a college graduate I spent a few years first as an inventory clerk and then as an administrative assistant wondering if I would ever be given a chance to lead anything. Fortunately I found mentors and sponsors who helped me realize my aspirations, but many people with disabilities, of all working age groups, remain unemployed or under-employed. I hear the same story time and again of people stuck in dead-end jobs where they are under-utilized but remain in order to have access to medical benefits and some form of income and socialization.

Managers of people with disabilities sometimes assume that everything is fine because the person with a disability who works for them is not complaining, even if they have remained in an entry level role for an extended period and are not interacting with people outside of their immediate work area. These employees are highly vulnerable to reductions in force as their skills often become dated since they are not being chosen for developmental assignments and training, and they are typically not visible to more senior leadership with business decisions are made about who will be separated.

Suggestion #3: Make sure your programs for individuals who are differently able continue after the person is hired. Ensure managers understand that they need to continuously develop this talent both in terms of technical and leadership skills, and follow the progress of people with disabilities once they join your firm to ensure they are reaching their full potential to contribute to the business. If you have people with disabilities languishing in entry level roles, find out why, even if they are not complaining, and support them to grow and develop. If you have low expectations, of anyone, they will likely live up to them.

Speaking of expectations, should Caregivers be included in your company's disability strategy? Do they expect to be included?

How many here today have ever been a caregiver for someone with a health condition? Most of us have, including those of us who have a disability ourselves. My husband Dan, who is here with me today, and I both have disabilities ourselves, and are also caring for 3 children with disabilities and both of our Mothers who are challenged by various conditions. We are just as grateful for the resources and support that we have access to as caregivers as the workplace accommodations I have had available to me over the years

Your reward for addressing the needs of caregivers as part of your corporations disability strategy? More engaged employees who are getting the support they need to care for a loved one so they can focus at work. Examples of resources we provide along those lines at Merck include elder care resource and referral, college planning resources for parents of children with autism spectrum disorders, a robust Employee Assistance Program, back-up child care, flexible work arrangements and various internal networks for Caregivers to exchange ideas and resources.

But there are some risks to focusing on this population as part of your overall approach to addressing disability at work. The "out" caregiver population is usually much larger than people who are willing to self-identify as having a disability. As a result the needs of this group can over-shadow the needs of the individuals who are differently able, and they do tend to be different. Caregivers are often focused on how to help their loved one get the quality health care and education-related support they need. People with disabilities are focused on career development, accommodations in the work environment, inclusion in company social activities, and social justice/equality issues like other under-represented populations in your workforce.

Suggestion #4: Combine the two groups if need be to create critical mass for your disability initiatives. Because there are some common interests, this can help get your programs up and running and help you to identify and train workplace "allies" who will create momentum. Separate and clearly articulate the needs and priorities of the two groups making sure that both are experiencing visible and substantive progress towards their most pressing concerns.

As I mentioned, caregivers are more often "out" than people who have a disability in the work environment. Why is it that so few people who are Differently Able self-identify? I think we can all rattle off the likely answers.

-Social stigma

-Fear of negative impact on their career

-Upbringing in our culture (if you want to be inspirational, you don't discuss your condition, that is not courageous)

-What good could come of it?

If you want to foster an environment where people are comfortable being out at work about their condition and therefore are able to more freely ask for what they need to be fully productive, engaged, and included, look to the lessons learned from the work those of us in the field of diversity and inclusion have done in the LGBT community, which faces many similar challenges around being out at work:

1)Ensure benefits plans and flexibility policies are equitable and accessible (e.g. eliminate pre-existing condition clauses in medical plans, provide coverage for mental health support, manage employees by objectives vs. face time).

2)Promote policies and practices that encourage and reward ease and timeliness of accommodations requests so that people are not afraid to make a request. Promote full inclusion using a social justice vs. a medical model. Language here again is very important. Avoid language like "work restriction" and replace with accommodation.

3)Engage allies in your workplace, and provide them with the language and tools of empowerment like "differently able" and wheelchair user. It was a big deal for the LGBT community when leaders could say those four words, we need to do the same for those who have been traditionally known as "handicapped." Say Differently Able at meetings and refer to this group in a manner that is empowered and deserving of respect as colleagues and consumers vs. in the context of philanthropy. Create "safe space" efforts where allies are available as visible confidantes to interrupt mis-information and champion full inclusion.

4)Provide just in time training to managers on practical ways to hire, develop and include people who are differently able and leverage websites, professional organizations, and campus recruiting resources like COSD and AAAS Entry Point. How many of you have been to an Out and Equal conference? It would be great if the USBLN looked more like that model with literally thousands of people with disabilities flocking to the conference to support their employers. At an Out and Equal conference there are many allies like myself, but we are vastly outnumbered by the LGBT community who annually gives an "Outie" award to a straight ally who exemplifies courage in supporting the LGBT community. Our polarities here at USBLN need to be reversedI think as I am guessing we have far more able-bodied allies here than people with disabilities.

5)Make sure your business case is strong and well articulated for this population which is well represented both in the labor pool and marketplace. LGBT and disability populations are very similar in size and buying power.

6)Ensure that senior level leaders who are differently able are visible as role models and have them address head-on the perceived risks around being out and the importance of bringing all of who you are to work.

7)Invite other Employee Resource Groups to support disability efforts. Since all other groups include people with disabilities there is a strong case to be made for everyone getting involved in the efforts for this constituency. Remind your ERG members that cultural differences can lead to additional challenges for people who are differently able, and if we are to address the needs of this population, as we have done with LGBT, we need to be courageous enough to say out loud how these cultural norms compound the challenges people with disabilities face.

8)Include companies owned and managed by people with disabilities in your supplier diversity programs. The National Gay and Lesbian Chamber of Commerce (NGLCC), has provided much support and guidance to USBLN in helping to develop a robust program that will help you identify and leverage businesses that can become part of your overall strategy.

Suggestion #5: Apply best practices and lessons learned from LGBT advocacy work in addressing needs of employees who are differently able.

And speaking of additional challenges, what about our veterans with disabilities?

With the current conflicts in the Middle East and the many service men and women who are returning with both hidden and visible disabilities, there is a new call to action we must all rise to. The military is looking for corporate partners to help them in supporting veterans who are transitioning back to civilian life. Now more than ever it is important that we invest time and effort in understanding the transferrable skills that these men and women learned during their service and how they might be applied in our industries. We also need to educate ourselves in the various hidden disabilities that are all-too-prevalent in this population including post traumatic stress disorder, traumatic brain injuries, and various other chronic health conditions that are the result of the extreme and dangerous duty they lived through.

Suggestion #6: Develop partnerships with military leadership to understand and transition returning veterans. At Merck we have formed a Veteran's leadership network that is made up of about 50 men and women from all branches of the military who have informed our outreach, recruitment, accommodation, and inclusion efforts in a manner that is respectful, sensitive, and credible. We are still early in this journey, but are encouraged by the enthusiasm of our Merck veterans who are applying their can-do spirit to the challenges associated with matching returning veterans with our job opportunities.

Speaking of can-do spirit, do you have reward and recognition programs to celebrate best practices?

Being a person who is differently able or a caregiver to someone often inspires creativity and innovation. That is another reason (in addition to how disability translates) why at Merck we chose the terminology "differently able." Human beings are amazingly adaptive when necessity arises, and can figure out how to accomplish things in spite of seemingly insurmountable obstacles. Over the past few years I have learned about some great examples of human ingenuity and business excellence associated with people who are differently able: