'In the end, the goal is the same'
Being black, blind, and physically disabled might seem like three strikes against Al Swain, but nothing could be further from the truth. Thanks to a wise mother, the Michigan resident was raised to believe that being an African American did not mean he was inferior to anyone else, or that he could not be whatever he wanted to be. Thus, when his physical disabilities began with blindness at age nine, he was already equipped to view them in the same positive light, and simply carry on with living like everyone else.
"Mother told me that where life would take me would depend on me, and what I would do and learn," Mr. Swain says. "It should not be that because I am African American I can't do something."
So well was her message received, in fact, that he has always been a man who instinctively turns negatives into positives, often with humour, and also sees diversity as a passport.
"Diversity is a big buzz word today, and I tell people that in 1957 I decided to be born an African American, then I decided at age nine to be a person who was blind. At age 16 I decided to lock it up with multiple sclerosis because I knew diversity would be a hot topic in 2000 and I would be in great demand," he says.
Mr. Swain has always believed in battling the traditional obstacles and prejudices commonly placed in the way of people like himself, so it is hardly surprising that, following his graduation from college with a Bachelor's degree in sociology, and a two-year search for a job, he finally wound up in the very place where he could do the most good: the Capital Area Center for Independent Living in Lansing, Michigan, where he is the associate director.
"It is a human services agency for people with disabilities, and we try to provide support so that they can live independently in their own community," he says.
In common with others similarly campaigning for the disabled to be accepted and treated like everyone else, Mr. Swain constantly strives to make progress.
"I have been in the independent movement for over 20 years and we have the same issues as Bermuda," he says. "We may have done more about them in some ways than Bermuda has, but the problems that people with disabilities face are still the same whether it is here, in the US or the United Kingdom."
The associate director defines these issues as:
1. Access to employment
2. Affordable and wheelchair-accessible housing
3. Transportation
While resources relevant to those with disabilities have improved over the years, Mr. Swain admits that the core issues remain the same.
"What really needs to happen in 2002 is for governments to say, 'We know what the issues are, but we need to buckle down and do something real about the changing the problems so that, hopefully, 20 years from now we won't be saying, 'It is still a problem'."
Certainly, he knows whereof he speaks because every day at work he spends hours on the telephone assisting those with disabilities one way or another, as well as fighting the ignorance and prejudices of the able bodied.
"I am trained in understanding the American Disabilities Act, and many times people call with issues asking us to help advocate for them," he says. "Usually we can just talk to the owner. I find that people who do discriminatory things to those with disabilities usually do so because, if it is not part of their life experience, they don't think about them.
"So we approach everyone as if they don't understand, and we try to educate them."
Citing restaurant access ramps as an example, Mr. Swain says it makes good business sense to provide them because the dollars of the disabled are just the same as anyone else's.
"Once you start to explain this to business people a lot of them get it, although once in a while some of them don't and refuse, so then you have to put a little pressure on them, and I'm good at that too!"
In fact, the associate director says in the United States there is a name for able-bodied people who are reluctant and uncooperative when it comes to accommodating the disabled.
"We call them 'TAB's', which stands for 'temporarily able-bodied', or the updated version: 'CRABs', which stands for 'currently regarded as able-bodied'."
As for wheelchair users, of which he is one, Mr. Swain says the able-bodied tend to forget that there is no guarantee that they too won't end up in the same situation themselves some day.
"A friend of mine says there are only two types of people in the world: the diagnosed and the undiagnosed," he notes.
With his mother's philosophy as his guiding light, it was always on the cards that Mr. Swain would be a go-getter, so his job with the Capital Area Centre is but one focus of a busy and productive life.
The process began with his graduation from the Michigan School for the Blind as class valedictorian. Then, when he graduated from Olivet College with his BA degree, he weighed up his options in terms of the where the best support systems for independent living were, and decided Lansing was his answer. One interview during two long and fruitless years of job hunting gave him a clue to the prejudice he, and others like him, were facing, and why he had never been hired.
"A guy handed me a bunch of papers to read, and I said, 'I'm totally blind'. There was a pause for a minute and then he said, 'Well, what the hell are you doing here?'," Mr. Swain recalls.
That did it. When he heard that the Capital Area Centre for Independent Living was hiring, he applied, and turned a negative into many positives.
"When I got there it was a whole different experience because they said, 'We love it that you have a disability. In fact, we want you to wave it around like a flag, and go out and talk to people about what the community needs'. So, for 21 years I've been saying, 'I'm okay, I'm just like you. You may do some things differently but in the end, the goal is the same'."
Thanks to Lancing's public transportation systems, which include wheelchair accessible buses and an on-demand car service, he gets wherever he wants to go. Each day, he is driven to and from his office, where he functions like anyone else, thanks to modern technology which includes a machine that converts the written word into a speaking voice, and a phenomenal memory for telephone numbers.
But life isn't all about the Capital Area Center. Mr. Swain is deeply involved in other community activities. He sits on the advisory board of the Capital Area Transportation Authority, and also gives its new drivers sensitivity training in the needs of the disabled. He is a member of seven boards and commissions appointed by the Governor of Michigan, again to benefit the disabled.
"A long time ago I understood that politics and laws will be made with or without you, and many times if you are not around the table decisions will be made which are not in your best interests, so I decided if laws are going to be made which affect my life I had better be sure I can help, and steer them in the direction that is going to be beneficial to people with disabilities," he says.
Mr. Swain is aware, however, that passing laws is only half the battle. Changing attitudes is the other.
For that reason he is also a much-sought after public speaker, which is why he is here for Access Awareness Week, and he particularly likes to address children because he says "there is still time to make an impact on their perspective before they become adults".
"You get them young enough to make a difference in how they are going to treat and include people with disabilities," he says.
Asked what annoys him most about having a disability, Mr. Swain says it is able bodied people who keep him waiting while they occupy the lavatory specifically allotted to the wheelchair users because it is more spacious so they can sit and read an open newspaper in comfort.
Married to Rebecca, who is partially sighted, the couple live much the same as anyone else, although they do have help with some aspects of domestic life. Mrs. Swain dislikes cooking, and her husband only "dabbles" in the kitchen, so when they want a fancy recipe made, Mr. Swain's nephew James is drafted in. The two men have been best buddies from childhood because they are around the same age, and it is James who takes Mr. Swain to the supermarket, where he carefully explains everything that's on the shelves.
"The result is that when we shop the bill really shoots up because I pick up on the enthusiasm in James' voice and say, 'Oh, I've got to have that'. When we get home, Rebecca says, 'Okay, how much did you two spend?'."
In fact, this delightful man says he loves to shop - anywhere, anytime.
"I think I got the shopping gene in my family, I can spend hours in a mall, and when it comes to the credit card war, I win over my wife every time!"
Having been sighted until the age of nine, when a form of multiple sclerosis irrevocably damaged his optic nerves, Mr. Swain remembers colours, and enjoys shopping for clothes with someone whose judgment he trusts. He also loves to travel, and has already fallen in love with Bermuda.
"I hope I'll be invited back again and again," he laughs.
Asked how he "sees" a destination, Mr. Swain says it is the sounds, smells, and personalities of the people he loves to meet which make it all add up for him.
Meanwhile, his message to all those with disabilities is: "With the right supports everybody can live like me. When I became blind at age nine I got support whenever I needed it from my family, my school, my college, my employer. That is what got me from that age to where I am now at 44, and I think it can be that way for others with disabilities, which is why I continue to put the message out there because I know what it should be like for them."
A complimentary tour of the Bermuda Underwater Exploration Institute exhibits will precede Mr. Swain's talk at 6 p.m. For further information ( 292-7207.